There’s something that happens when you walk the halls of Congress and say, out loud,” I’m here because of the IPPF Community”. It’s equal parts nerve-wracking and clarifying. That’s exactly where I found myself this past May, representing the IPPF community at the 2026 Coalition of Skin Diseases Hill Day in Washington, D.C. This wasn’t my first time advocating on behalf of the pemphigus and pemphigoid (P/P) community, but every Hill Day reminds me of why this work matters and why it can’t stop. 

The Coalition of Skin Diseases (CSD) is a voluntary coalition of patient advocacy organizations working to improve the lives of the more than 84 million Americans living with a skin disease. The IPPF has been a long-time proud member of the CSD, and the Hill Day brings patients, caregivers, and patient advocates together to meet directly with members of Congress and their staff. This year, the event was May 18-20th at The Morrow Hotel in Washington, D.C. It was 2 days full of advocacy training, prominent speakers, a Congressional Briefing, networking with other advocates, story sharing, and face to face legislative meetings on Capitol Hill.  

The first day was all about preparation. Before any of us walked into a congressional office, we went through advocacy training together. We learned about the “ask”, how to frame our personal stories, how to connect them to specific policy “asks”, and how to have productive and focused conversations with legislators and their staff in the short time slot we are given. 

For those of us representing rare skin diseases, the framing is even more important. P/P are not household names. When I’m sitting across from a legislative aide, I have a few minutes to explain that these are serious, painful, life-altering and sometimes life-threatening autoimmune blistering diseases with no cures. At the same time, I need Congress to understand that the policies they make have a direct impact on whether we patients can access the care and treatments we desperately need. 

The training helped us all sharpen that message. We also heard from prominent speakers that work as staffers in Congressional offices, including Molly Burns, Legislative Assistant to Debbie Dingell, my own Representative.  We also had time to connect with fellow advocates from our state as well as those from across the country. I met people living and thriving with scleroderma, psoriasis, cutaneous lymphoma, hidradenitis suppurativa, and more. The CSD community and shared purpose is its own kind of fuel. 

The CSD’s 2026 advocacy priorities centered on limiting harmful insurance practices, including prior authorization, step therapy, and non-medical switching, that act as barriers to care. We also pushed for increased NIH funding for skin disease research, specifically through the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), where only a fraction of the budget currently goes toward skin disease despite the enormous number of Americans affected. And we called for money paid on a patient’s behalf through a rebate program or coupon card to be applied to our out of pocket maximums or co-pays since those have been paid with real dollars. 

Day two was Hill Day itself. Armed with our talking points, our stories and a clear set of legislative asks, 75 patients and advocates from 26 states fanned out across Capitol Hill for 105 legislative meetings with our federal representatives and their staff. I had the opportunity to meet with staff of Senator Elissa Slotkin (MI), Senator Gary Peters (MI), Representative Debbie Dingell (MI) and Representative Rashida Tlaib (MI). I brought the P/P community into each of those rooms with me. I talked about what it means to live with these diseases, the painful blisters, the emotional vulnerability and the disruption to “normal” work and family life. I talked about patients who’ve had to fight our insurance companies for access to treatments our doctors prescribed. And I made our asks clear. I left Washington having walked 18,000 steps on the Hill. I was tired, but I was hopeful, which honestly feels like the right combination for this kind of work. 

One of the highlights of Hill Day is always the Congressional Briefing – a formal session that draws staff from advocacy organizations, congressional offices, federal agencies, industry and sometimes academic institutions. This year’s briefing gave our coalition an opportunity to present the case for skin disease policy reform in front of a broad, engaged audience, including the Deputy Director of NIAMS, and Representative John Joyce, the only dermatologist in Congress. What struck me, as it always does, is how much education and policy change is still needed. Skin disease carries a significant and often invisible burden, not just physically, but financially and emotionally. Patients face insurance barriers at nearly every turn. Prior authorization delays can mean weeks if not months without access to critical medications. Step therapy protocols force patients to try treatments their doctors have already determined won’t work for them, or that patients have already tried without success. And research funding for skin diseases remains dramatically underfunded relative to the burden these conditions place on patients and their families. For our community, specifically, those stakes are high. P/P can be life-threatening. They are chronic. They require specialized and on-going care. And they are rare enough that many legislators, and even some healthcare providers, have never encountered them. 

Legislative changes are slow. It doesn’t happen from one meeting or one Hill Day. But it also doesn’t happen without them. I heard advocacy once described as a waltz, not a jitterbug. It will be slow, it will not seem like you are making progress, but forward movement is being made with every step and one day, the mission will be accomplished. Every advocate who walks into their congressional office and puts a human face on a disease makes it a little harder for that legislator to ignore. Every story shared, every policy ask make, every follow-up email sent will add up. I am grateful to the Coalition of Skin Diseases for making this event possible, including providing travel support so that patient advocates, who might not otherwise be able to attend, can have their voices heard.

And I’m grateful to every single person in our P/P community who has shared their story with me, trusted me to carry it to Washington, and continues to fight for a better path forward. If you ever thought about advocacy work and wondered whether you could do it, YOU CAN! You don’t need a policy background. You need your story, and your story is powerful. Our community deserves to be heard. And I’ll keep showing up until Congress hears us and helps us. 

The post Speaking Up for the IPPF Community at the 2026 Coalition of Skin Diseases Hill Day  first appeared on IPPF.

Receiving a diagnosis of pemphigus or pemphigoid (P/P) can feel overwhelming, and it’s natural to search for meaning in a journey that may seem uncertain at first. While these conditions bring their own challenges, they can also be an opportunity for growth, resilience, and connection. In this post, we’ll explore how patients and caregivers can find a sense of purpose and strength in their experience, discovering new ways to live fully while navigating the ups and downs of life with (P/P).

Reflective practices:

• Journaling: https://positivepsychology.com/journaling-for-mindfulness/
  • Reflecting on your thoughts and emotions through journaling can help you process your experiences, track your health progress, and gain clarity. Journaling can also be a therapeutic way to manage stress and anxiety.
• Art, music, or nature: https://www.uhhospitals.org/blog/articles/2024/01/how-expressive-therapies-help-patients-heal
  • Explores how creative and expressive therapy can improve the quality of life for those with chronic health conditions.
• Prayer, meditation, or meaningful rituals: https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858
  • Practicing mindfulness and meditation can help you stay present and reduce stress, especially when dealing with chronic conditions. It encourages emotional well-being and fosters a positive mindset.
• Mirror Moments (Self-Compassion Check-Ins): https://www.mindful.org/what-the-mirror-can-teach-you-about-yourself-advice-from-a-mirror-gazing-expert/
  • Pause and ask: “How am I really doing right now?” and “What do I need today—emotionally, physically, spiritually?”
  • Treat yourself like you would a dear friend in crisis

You may be changed, but you are not broken.

Next Time: “Be the Help You Once Needed: Volunteer with the IPPF

The post Finding Meaning in the Mess first appeared on IPPF.

Traveling with a rare disease isn’t always simple but it is possible. Whether you’re heading out for a much-needed vacation, visiting loved ones, or attending a conference, the desire to explore and connect with the world doesn’t go away with a diagnosis. In fact, for many living with pemphigus and pemphigoid, travel can be a powerful reminder that life is still full of opportunities, discovery, and joy.

Still, we know the logistics can feel overwhelming – managing medications, preparing for the unexpected, and wondering if your body will cooperate. That’s why we’ve created this list: to offer practical tips, encouragement, and tools to help you travel with greater confidence and peace of mind. Because you deserve to experience new places and meaningful moments without having to leave your health and comfort behind.

Helpful hints collected from the IPPF community:

• Bring all your meds + extras in your carry-on
• Bring a list of your current meds, dosages, and emergency contacts.
• Keep medications in their original labeled containers and pack them in your carry-on, not checked luggage.
• Call hotels ahead about accessibility and comfort needs
• Get medical clearance and any necessary documentation
• Ask your doctor for a letter explaining your condition, medications, and treatment needs (especially important for security or customs).
• Check if your insurance covers you while away
• If traveling internationally, consider travel medical insurance
• Identify nearby clinics, pharmacies, and hospitals at your destination
• Build in downtime and don’t overpack your itinerary
• Plan travel during your best time of day (e.g., mornings if fatigue worsens later)
• Bring comfort items (e.g., neck pillow, compression socks, heating pad)
• Pack snacks and water, especially if you need to avoid certain foods.
• Stay hydrated & eat regularly
• On planes or long drives, stretch or walk when possible to prevent stiffness or clots.
• Don’t be afraid to ask for help – use priority boarding, mobility assistance, or hotel accessibility options if needed
• Listen to your body

Remember: pemphigus or pemphigoid is part of your story, but it doesn’t define your experiences. Be kind to yourself, build in flexibility, and don’t hesitate to ask for help when you need it. Most importantly, give yourself permission to find joy in the adventure – your way, at your pace.

Next Time: “Managing the Costs of Care”

The post Travel Tips for People with Pemphigus or Pemphigoid first appeared on IPPF.

If you or someone you know is in immediate danger, please call 911 or go to the nearest emergency room.

Living with pemphigus or pemphigoid can be isolating, especially when symptoms like pain, fatigue, or visible flares make it hard to socialize or keep up with your usual routine. It’s understandable if you’ve pulled back from friends, family, or activities you once enjoyed.

But connection matters. Whether it’s a quick text, a virtual chat, or a heartfelt conversation with someone who truly gets it, staying connected – even in small ways – can have a big impact on your emotional well-being.

In this message, we’ll share a few simple ways to maintain and rebuild meaningful connections, even on the hardest days. Because you are not alone and you deserve support that makes you feel seen, heard, and valued.

Ways to stay connected:

• Be Honest About How You’re Feeling – Let your loved ones know when you’re having a tough day. A simple “I’m not up for a long talk, but I’d love a quick check-in” keeps the lines of communication open without adding pressure.
• Use Technology to Stay Close – Video chats, voice messages, and even group texts can help you feel involved when going out isn’t possible. Virtual support groups can also connect you with others who understand life with pemphigus or pemphigoid.
• Pace Yourself Socially – It’s okay to say no when your body needs rest. Prioritize the connections that feel meaningful and energizing rather than draining. Even short, positive interactions can make a big difference.
• Lean on Peer Support – Talking with someone who has walked a similar path can ease loneliness and help you feel seen. IPPF’s Peer Coach Program or support groups offer safe spaces to share and learn from others.
• Reconnect in Small, Low-Energy Ways – Send a card, share a favorite memory, or comment on a friend’s post.These small acts keep you engaged and help others know you still care, even if you’re not always able to show up in big ways.

You don’t have to go through this alone. Here are some resources to find additional information and support:

• Mental Health America – Living with Chronic Illness: mhanational.org/chronic-illness
  • Offers information on how chronic health conditions affect mental health and provides tools for coping with anxiety, depression, and stress
• National Alliance on Mental Illness (NAMI): nami.org
  • Find free support groups, education, and a helpline for people managing mental health challenges—including those with chronic or rare diseases.
• Psychology Today – Find a Therapist: psychologytoday.com/us/therapists
  • Use your zip code to search for therapists experienced in chronic illness, trauma, anxiety, or grief. Many offer telehealth appointments.
• Rare Disease Mental Health Resource Hub – NORD: rarediseases.org/mental-health
  • A hub created specifically for rare disease patients and caregivers, with articles, webinars, and personal stories focused on mental and emotional well-being.

Next Time: “Travel Tips for People with Pemphigus or Pemphigoid”

The post  Staying Connected, Even When It’s Hard first appeared on IPPF.

If you or someone you know is in immediate danger, please call 911 or go to the nearest emergency room.

Living with a rare disease can bring a unique set of challenges, many of which extend far beyond the physical symptoms. The uncertainty, isolation, and stress that often come with a rare diagnosis can take a real toll on your mental and emotional well-being. It’s okay to acknowledge that this journey is hard. It’s even more important to know that you don’t have to face it alone.

Whether you’ve been recently diagnosed or have been navigating life with a rare disease for years, your mental health matters. In this message, we want to share resources, tips, and support to help you care for your mind as well as your body.

Start here:

• Acknowledge your emotions without judgment – It’s normal to feel overwhelmed, anxious, or frustrated. Allow yourself to process those emotions without judgment. Mental health starts with self-compassion
• Talk to a therapist or mental health professional: Therapists familiar with chronic illness or rare disease can help you manage anxiety, grief, or depression related to your diagnosis. You don’t have to wait for a crisis to reach out.
• Build a support network – Connect with people who understand, family, friends, healthcare professioinals, or whether it’s through a rare disease support group, a peer mentor, or an online community. Shared experiences can ease isolation and help you feel seen.
• Track your emotional well-being – Just like you might track symptoms or medications, journaling or using a mood-tracking app can help you spot emotional patterns, triggers, or progress over time.
•  Practice self-compassion daily – create space for rest and joy – Even during flares or uncertainty, finding small moments for things that bring you comfort – whether that’s music, nature, creativity, or mindfulness – can build emotional resilience.
• Advocate for yourself – Feeling dismissed or misunderstood by others, including doctors, can harm your mental health. Practice communicating your needs clearly and consider bringing an advocate with you to appointments.

You’re not “too emotional.” You’re navigating something incredibly hard. And you’re doing it with courage. Consider attending an IPPF Event

Here are some resources to find additional information and support:

• Mental Health America – Living with Chronic Illness: mhanational.org/chronic-illness
  • Offers information on how chronic health conditions affect mental health and provides tools for coping with anxiety, depression, and stress
• National Alliance on Mental Illness (NAMI): nami.org
  • Find free support groups, education, and a helpline for people managing mental health challenges—including those with chronic or rare diseases.
• Psychology Today – Find a Therapist: psychologytoday.com/us/therapists
  • Use your zip code to search for therapists experienced in chronic illness, trauma, anxiety, or grief. Many offer telehealth appointments.
• Rare Disease Mental Health Resource Hub – NORD: rarediseases.org/mental-health
  • A hub created specifically for rare disease patients and caregivers, with articles, webinars, and personal stories focused on mental and emotional well-being.

Next Time: “Staying Connected, Even When It’s Hard”

The post Mental Health with a Rare Disease first appeared on IPPF.

Living with pemphigus and pemphigoid comes with many challenges – some visible, and others deeply personal. One area that can be especially difficult to talk about is how our diseases affect intimacy and close relationships. You’re not alone in facing these concerns, and it’s important to know that.

This message is meant to open the door to an honest, supportive conversation about the ways pemphigus and pemphigoid can impact physical closeness, emotional connection, and self-confidence, and how to navigate those challenges with care, understanding, and the right tools.

What helps:

• Open communication with your partner
• Focusing on emotional closeness first
• Time physical intimacy for the times of day you feel your best
• Being patient with yourself and each other
• Your worth and your capacity to love (and be loved) haven’t changed.

Links to intimacy websites you may find helpful:

• Mayo Clinic- Sexual health and chronic illness: https://www.mayoclinic.org/healthy-lifestyle/sexual-health/in-depth/sex-and-chronic-illness/art-20044706
  • Covers how fatigue, pain, and emotional stress affect intimacy with tips for communicating with partners and finding alternate forms of closeness.
• CreakyJoints – Maintaining Sex and Intimacy with a Chronic Illness:https://creakyjoints.org/lifestyle/maintain-sex-intimacy-with-chronic-illness/?utm_source=chatgpt.com
  • Offers practical tips from a rheumatology nurse on maintaining intimacy, emphasizing communication, planning, and adapting to changes in physical abilities
• Better Health Channel – Sex and Chronic Illness: https://www.betterhealth.vic.gov.au/health/servicesandsupport/Sex-and-chronic-illness?utm_source=chatgpt.com
  • Provides general advice on maintaining physical intimacy when living with a chronic illness, including the importance of communication and exploring different forms of closeness.
• Psychology Today – Sex & Love in Chronic Illness: https://www.google.com/search?q=Psychology+Today+%E2%80%93+Sex+%26+Love+in+Chronic+Illness&oq=Psychology+Today+%E2%80%93+Sex+%26+Love+in+Chronic+Illness&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRigATIHCAIQIRigAdIBBzc0N2owajmoAgCwAgE&sourceid=chrome&ie=UTF-8
  • Discusses the psychological aspects of maintaining intimacy when living with a chronic illness, including strategies for communication and emotional connection.
• Henry Ford Health – Sexuality after Chronic Illness: https://www.henryford.com/services/gynecology/sexual-health/sexuality-after-illness
  • Explores how chronic illness can affect sexual health and offers suggestions for adapting intimacy practices to accommodate health changes. 

Next Time: “You’re Not Alone: Mental Health with a Rare Disease”

The post Your Relationships Matter: Let’s Talk About Intimacy first appeared on IPPF.

Caring for others while managing a rare disease can feel overwhelming. You want to be there for your loved ones, but your energy is limited. When both caring for someone and being the person receiving care, effective communication and a clear understanding of roles and needs are crucial.

Gentle strategies:

• Open communication is essential
• Prioritize self-care
• Let go of perfection
• Respect each other’s boundaries
• Ask for help from your support network
• Explain your condition to your kids in simple, reassuring terms
• You’re still a great caregiver. You’re showing your loved one resilience in action.

Caregiver Resources

• Caregiver Action Network
• National Institute on Aging – Caregiving
• ARCH National Respite Network
• AARP Family Caregiving
• Family Caregiver Alliance (FCA)

“Your Relationships Matter: Let’s Talk About Intimacy”

The post When You’re the Caregiver and a Patient first appeared on IPPF.

Having pemphigus or pemphigoid can be a full-time job. Whether you’re working full-time, part-time, or from home, pemphigus or pemphigoid can make staying productive difficult. And doctor appointments, infusions and medication schedules can be hard to adhere to when you have a job. Navigating a chronic illness like pemphigus and pemphigoid  while maintaining a productive work life can be challenging, but it is achievable with the right strategies. 

Ideas for support:

• Open a dialog with your management or HR about possible accommodations
• Consider using short-term disability or Family and Medical Leave (FMLA)
• Use reminders and planning tools to manage brain fog
• Schedule demanding tasks during your “best” time of day
• Your value isn’t measured by how much you do. It’s in who you are.

Be sure to check with your state to see if they have programs that can help get you support quickly, like FMLA and ADA. Use these links to learn more about ADA rights and accommodations. Some additional resources are listed below:

• ADA.gov – Employment rights:  https://www.ada.gov/employment/
  • This is the official government site explaining how the ADA protects people with disabilities in the workplace. It includes what employers must do and what your rights are.
• Job Accommodation Network (JAN) – Skin Disorders Accommodation Guide: https://askjan.org/disabilities/Skin-Disorders.cfm
  • Offers specific examples of accommodations for individuals with skin conditions, including photosensitivity, wounds, and pain. 
• JAN: How to Request Workplace Accommodations: https://askjan.org/publications/individuals/employee-guide.cfm
  • This guide helps people navigate the process of disclosing a condition and requesting accommodations. Includes template letters.
• U.S. Equal Employment Opportunity Commission (EEOC) – Disability Discrimination: https://www.eeoc.gov/disability-discrimination
  • Details what counts as discrimination and how to file a complaint if rights are violated.
• U.S. Family and Medical Leave (FMLA) –https://www.dol.gov/general/topic/benefits-leave/fmla
  • A U.S. law that requires covered employers to provide eligible employees with job-protected, unpaid leave for specific family and medical reasons

Next Time: “When You’re the Caregiver and a Patient”

The post Managing Work When You’re Managing a Disease first appeared on IPPF.

Disrupted sleep is common with chronic illness, especially with pemphigus and pemphigoid. Between discomfort, itching, or medication side effects, you might struggle to rest well. We’ve collected a few tips from the community to share with you.

Try this:

• Keep a cool, dark, quiet sleep space
• Avoid heavy meals before bedtime
• Try to spend time outside and be active if possible
• Stick to a wind-down routine (same time each night)
• Ask your provider about meds that disrupt or aid sleep
• The doctor may have prescription medications that can help for pain
• Take prednisone in the morning

Rest isn’t lazy. It’s essential. You are doing enough.

Additional Resources

The Better Sleep Council: https://bettersleep.org/

NIH Healthy Sleep Habits: https://www.nhlbi.nih.gov/health/sleep-deprivation/healthy-sleep-habits

American Academy of Sleep Medicine: https://aasm.org/wp-content/uploads/2021/05/Prioritizing-Sleep-and-Managing-Fatigue.pdf

 Bedtime Calculator: https://sleepeducation.org/healthy-sleep/bedtime-calculator/

Healthy Sleep Habits: https://sleepeducation.org/healthy-sleep/healthy-sleep-habits/

Healthy Sleep: https://sleepeducation.org/healthy-sleep/

CDC Sleep: https://www.cdc.gov/sleep/

Next Time: “Managing Work When You’re Managing a Disease”

The post Rest is Healing: Tips for Better Sleep first appeared on IPPF.

This spotlight was recently featured in the American South Asian Network (ASAN).

When the IPPF named Ramesh Swamy its new Board President, the decision fused professional acumen with lived experience. The Vadakkencherry, Kerala born, Los Angeles-based financier founder of boutique merchant bank Halifax West, was diagnosed with pemphigus vulgaris a decade ago. That detour from spreadsheets to skin biopsies ignited what Swamy calls his “second startup”: building a support ecosystem for patients who often feel marooned by rarity and misdiagnosis.

Swamy’s résumé reads like a collision of Wall Street and Hollywood. After an early stint in Morgan Stanley’s structured – finance group, he launched Halifax West in 2016, advising middle-market companies on M&A, corporate restructurings, and principal investments most recently in climate-tech and digital-health ventures.

Beyond the balance sheet, Swamy moonlights as an executive producer with London/ Los Angeles studio Anna Barbara Films, backing documentaries that champion underrepresented voices. Board service is a through-line: Legal Aid Foundation of LA, Association for Corporate Growth, and now IPPF. Colleagues describe him as “equal parts spreadsheet and soul.”

Pemphigus vulgaris and related pemphigoid disorders are rare, potentially life-threatening autoimmune diseases that cause painful blisters across skin and mucous membranes. Because incidence hovers around one to five cases per million, diagnosis often drags on for months especially among South Asians, who face a disproportionately higher prevalence. Delays amplify infection risk, scarring, and emotional isolation.

The IPPF steps into that vacuum by pairing patients with trained peer coaches, funding clinician-education webinars, and maintaining a Natural History Registry that scientists mine for treatment clues. Swamy joined the board in 2018; as president he’ll now steer strategy, fundraising, and advocacy.

Read the full article here.

The post Meet Ramesh Swamy, New IPPF Board Chair first appeared on IPPF.

When pemphigus or pemphigoid affects your mouth or throat, something as simple as eating can become a painful and frustrating experience. Blisters and raw areas in the mouth, on the tongue, or down the throat can make chewing and swallowing difficult. But eating shouldn’t feel like a battle – you deserve to nourish your body in a way that supports healing and brings comfort. Good nutrition is essential for wound healing, maintaining energy, supporting your immune system, and managing the side effects of medications like corticosteroids or immunosuppressants. But when oral or throat involvement limits what you can eat, meeting your nutritional needs can be a challenge.

A Registered Dietitian (RD) is a licensed healthcare professional trained to help you make food choices that support your health. An RD can work with you to identify soft, ntrient-rich foods that won’t irritate your mouth or throat. They can help you create a meal plan that meets your protein, vitamin, and calorie needs and even recommend strategies to maintain weight and muscle mass if you’re losing weight unintentionally.

Try these foods:

• Smoothies
• Mashed sweet potatoes
• Scrambled eggs
• Yogurt (non-acidic)
• Soup
• Cooked vegetables

Keeping a food journal can help you identify patterns – what foods feel soothing, which ones make symptoms worse, and how your body responds. Write down what you eat (or take a picture of your plate before eating on your mobile device), how your mouth or throat feels afterward, and any flare-ups or improvements you notice. This record can help both you and your medical team adjust your diet for comfort and healing. Every small choice adds up to better healing. If you feel it would be helpful for you, download the IPPF Food tracker.

Next Time: “Rest is Healing: Tips for Better Sleep“

The post Finding Foods that Work for You When You Have Oral Lesions first appeared on IPPF.

Living with pemphigus or pemphigoid means getting to know your body in a new way. These are rare, chronic autoimmune diseases that affect the skin and mucous membranes, often making them feel fragile, painful, or unfamiliar. The symptoms may come and go in flares, and even the most routine tasks (like brushing your teeth or getting dressed) can suddenly feel overwhelming. It’s okay to grieve the changes you’re experiencing. Just as importantly, it’s okay to take extra time to care for yourself.

Here are some tips from the IPPF community, shared by those who live with pemphigus or pemphigoid and have learned to adapt with kindness and resilience:

• Choose soft, tagless clothing made from natural or moisture-wicking fibers.
• Avoid long hot showers; go for lukewarm and use gentle cleansers that are unscented and dye-free.
• Pat your skin dry, in place of rubbing. Better yet, drip dry
• Moisturize to protect your intact skin helps maintain the skin barrier and can reduce discomfort. Choose creams or ointments that are fragrance-free and formulated for sensitive skin
• Use alternatives to tape to hold dressings in place such as cohesive bandages, gauze wrap, snug clothing, and tubular bands.
• Consider non-stick pads to cover wounds
• Wear hats and/or clothing made of SPF fabric
• Rest when you need to
• Brush your teeth with a toddler/child-size toothbrush
• When mint/cinnamon toothpaste hurts, turn to children’s toothpaste
• Stay hydrated – Drinking water throughout the day helps to keep your mouth moist and supports healing
• Follow your medication regime and take your medicines on time

Remember: self-care is not selfish. Taking steps to reduce discomfort, support healing, and preserve your emotional well-being is essential for navigating life with a rare disease. You deserve comfort, every day. For additional information, visit our patient resources page.

Next Time: “Finding Foods that Work for You When You Have Oral Lesions“

The post Soothing the Skin You’re In: Practical Care for Pemphigus and Pemphigoid first appeared on IPPF.

Dear IPPF Community,

Today, I’m incredibly grateful to share the exciting news that the U.S. FDA has approved Dupixent (dupilumab) for the treatment of adult patients with bullous pemphigoid (BP)!

As you may know, the IPPF has worked closely with our industry partners at Sanofi and Regeneron, government regulators, medical professionals, and advocates, all in hopes of seeing this day arrive. While these collaborations have been critical, the most important efforts along this journey have come from you: the patients and caregivers who have shown tremendous courage and strength during some of the most difficult days of your lives.

If you have ever participated in a clinical trial, spoken up at an IPPF event, hosted or attended a support group, shared your story, connected with another patient, spent a few minutes educating someone about your disease, made a donation, or simply been present with us, this is your win. Even if you don’t have BP, by being a part of the IPPF community, you helped make this landmark approval happen.

In the coming days, many of you will have questions about what this approval means for individual BP patients. The IPPF is actively working to find the right resources to answer your questions and to learn what comes next for patients hoping to access Dupixent.

Please note that although Dupixent has been approved, it typically takes some time for payors (i.g., insurance companies) to add new approvals for coverage. As always, the best resource for your individual situation is your treating medical team. The IPPF staff are not doctors, so we cannot make recommendations on how to treat your specific case. However, we are here to be a clearinghouse of information about your disease, and we will share more details about Dupixent very soon.

To learn more about Dupixent and its approval for BP, I encourage you to read this morning’s press releases from Sanofi and Regeneron:

Sanofi press release
Regeneron press release

Thank you for being an essential part of the IPPF community. Without YOU, none of this would be possible!

Sincerely,

Patrick Dunn
IPPF Executive Director

The post Dupixent Approved for Bullous Pemphigoid first appeared on IPPF.

Navigating life with pemphigus or pemphigoid (P/P) can be a challenging journey, filled with uncertainty and questions. Whether you’re newly diagnosed or have been living with these rare autoimmune diseases for years, one thing remains constant: Knowledge is power. Understanding your condition, treatment options, and the latest research can empower you to take control of your health and improve your quality of life.

P/P are complex diseases that affect each person differently. Symptoms, triggers, and treatment responses vary widely, making it essential for patients and caregivers to be well-informed. Learning about the disease can help patients recognize symptoms early, understand treatment options, and communicate effectively with their healthcare team.

For those newly diagnosed, the journey can be overwhelming. “I felt so alone when I was first diagnosed. I didn’t know what pemphigus was or how to manage it,” shared one patient. “Finding accurate information helped me understand my symptoms and gave me hope.” Education helps demystify these diseases, reducing anxiety and empowering patients to make informed decisions about their care.

Even for those who have been on this journey for a while, continuous learning is crucial. Research is constantly evolving, and new treatments are emerging. Staying informed about the latest advancements ensures that you are aware of all available options and can advocate for the best possible care.

One of the most effective tools for learning about P/P is the IPPF’s Patient Education Series (PES) webinars. They are designed to provide patients and caregivers with reliable, up-to-date information from leading experts in the field. They cover a wide range of topics, including disease mechanisms, treatment options, symptom management, and the latest research developments.

These webinars offer the unique opportunity to learn directly from dermatologists, immunologists, and researchers who specialize in P/P. Participants can ask questions and learn practical strategies for managing their condition.

“The PES webinars have been a game-changer for me,” shared a patient. “I’ve learned so much about treatment options and how to manage my symptoms. It feels empowering to understand my disease and know that I have a community of support.”

One of the most significant challenges for individuals with P/P is navigating treatment options. The webinars provide detailed explanations of available treatments, including corticosteroids, immunosuppressants, and newer biologic therapies. Understanding how these treatments work and their potential side effects allows patients to have informed conversations with their healthcare providers.

Additionally, the webinars highlight the latest research in the field. With ongoing studies on new therapies and a better understanding of disease mechanisms, staying informed ensures that patients are aware of cutting-edge treatment options.

Beyond education, PES webinars foster a sense of community. Living with a rare disease can be isolating, but these webinars allow patients to connect from around the world as we realize we have similar experiences, no matter where we live. Our experiences, challenges, and successes build a supportive network where people feel understood and less alone.

The IPPF is committed to supporting patients at every step of their journey. Our PES webinars are just one of the many resources designed to empower and educate the P/P community. By staying informed, you are not just learning about your disease—you are taking control of your health and building a stronger, more connected community.

To learn more about our upcoming webinars or to watch past recordings, visit the IPPF website. Together, we can face the challenges of P/P with knowledge, resilience, and hope.

The post Knowledge is Power: Understanding Pemphigus and Pemphigoid first appeared on IPPF.

Dupixent is the first and only biologic to achieve significant improvements in disease remission and symptoms in bullous pemphigoid positive pivotal study

September 11, 2024

Highlights:

• Study met the primary and all key secondary endpoints in adults with moderate-to-severe disease; five times more patients achieved sustained disease remission with Dupixent than placebo
• Dupixent is the first medicine to show significant steroid-sparing effect in this debilitating and life-threatening disease
• If approved, Dupixent would be the first and only targeted medicine to treat BP in the U.S. and European Union

A Dupixent (dupilumab) pivotal study (ADEPT) in bullous pemphigoid (BP) met the primary and all key secondary endpoints evaluating its investigational use in adults with moderate-to-severe disease. In the study, five times more Dupixent patients achieved sustained disease remission compared to those on placebo. Sustained disease remission was defined as complete clinical remission with completion of oral corticosteroids (OCS) taper by week 16 without relapse and no rescue therapy use during the 36-week treatment period. Dupixent was previously granted Orphan Drug Designation by the U.S. Food and Drug Administration for BP, which applies to investigational medicines intended for the treatment of rare diseases that affect fewer than 200,000 people in the U.S. This study will support regulatory submissions around the world, starting with the U.S. later this year.

“The needs of bullous pemphigoid patients have gone unmet for far too long,” said Patrick Dunn, Executive Director of the International Pemphigus & Pemphigoid Foundation (IPPF). “The IPPF is excited and encouraged by the positive results reported from this study, and we will do everything we can to support future regulatory decisions that will improve the quality of life for people affected by BP. We are grateful for the Sanofi and Regeneron teams, as well as the entire community of patients, caregivers, investigators, researchers, and clinicians who have gotten us to this important milestone.”

BP, a chronic and relapsing disease, is characterized by intense itch and blisters, reddening of the skin, and painful chronic lesions. The blisters and rash can form over much of the body and cause the skin to bleed and crust, resulting in patients being more prone to infection and affecting their daily functioning. “The itchy blisters caused by bullous pemphigoid can be so intense they are debilitating, especially for elderly patients,” said Dietmar Berger, M.D., Ph.D., Chief Medical Officer, Global Head of Development at Sanofi. “There is a significant unmet medical need for new medicines for people suffering with this hard-to-treat disease in which the standard of care is oral and topical corticosteroids and immunosuppressants – treatments that have poor clinical outcomes and safety concerns, respectively, and should be used sparingly in an elderly population. These positive pivotal results for bullous pemphigoid add to an immense body of scientific evidence that underscores the important role IL4 and IL13 play in driving diseases characterized by itch. Combined with the consistent safety profile of the other dermatology indications, these results show the potential of Dupixent to transform the treatment paradigm for bullous pemphigoid.”

“Bullous pemphigoid is a debilitating skin disease with a high mortality rate due to infection,” said George D. Yancopoulos, M.D., Ph.D., Board co-Chair, President, and Chief Scientific Officer at Regeneron. “Dupixent is the first medication to show significant and robust impacts in this patient population. These latest pivotal results reaffirm the underlying role type-2 inflammation plays in driving multiple skin diseases. We look forward to further advancing this research and sharing the positive results from the bullous pemphigoid pivotal trial with regulatory authorities.”

In the ADEPT study, 106 adults with moderate-to-severe BP were randomized to receive Dupixent 300 mg (n=53) every two weeks after an initial loading dose or placebo (n=53), along with standard-of-care OCS. During treatment, all patients underwent a protocol-defined OCS tapering regimen if control of disease activity was maintained.

For the primary endpoint, 20% of Dupixent patients experienced sustained disease remission at 36 weeks compared to 4% for placebo (p=0.0114). For the components comprising the primary endpoint – with patients having to achieve all components – efficacy among patients receiving Dupixent compared to placebo was as follows*:

• Absence of disease relapse after patient completed OCS taper: 59% vs. 16% (nominal p=0.0023)
• Absence of need for rescue therapy during treatment period: 42% vs. 12% (nominal p=0.0004)
• Achievement of complete remission and off OCS by week 16: 38% vs. 27% (not significant)

*Components were not separately included in pre-specified statistical analyses and are therefore nominal

For selected secondary endpoints, results for Dupixent compared to placebo were statistically significant as follows:

• Patients achieving ≥90% reduction in disease severity: 41% vs. 10% (p=0.0003)
• Patients achieving clinically meaningful itch reduction: 40% vs. 11% (p=0.0006)
• Secondary endpoints assessing decreased OCS use, and time to use of rescue medications, also favored Dupixent and were significant (p=0.0220 and p=0.0016, respectively)
• Reduction in disease severity from baseline: 77% vs. 51% (p=0.0021)
• Reduction in itch from baseline: 52% vs. 27% (p=0.0021)
• Days of complete remission off OCS: 40 vs. 13 (p=0.0072)

In this older population, overall rates of adverse events (AEs) were 96% (n=51) for Dupixent and 96% (n=51) for placebo. AEs more commonly observed with Dupixent compared to placebo in more than 3 patients included peripheral edema (n=8 vs. n=5), arthralgia (n=5 vs. n=3), back pain (n=4 vs. n=2), blurred vision (n=4 vs. n=0), hypertension (n=4 vs. n=3), asthma (n=4 vs. n=1), conjunctivitis (n=4 vs. n=0), constipation (n=4 vs. n=1), upper respiratory tract infection (n=3 vs. n=1), limb injury (n=3 vs. n=2), and insomnia (n=3 vs. n=2). There were no AEs leading to death in the Dupixent group and 2 AEs leading to death in the placebo group.

The post Dupixent Meets Endpoints in Phase 2/3 Bullous Pemphigoid Study first appeared on IPPF.

To celebrate Rare Disease Day 2024, the IPPF is excited to announce the publication of Understanding the Unmet Needs of the Pemphigus & Pemphigoid Community. This “Voice of the Patient” is a summary of the Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting on Pemphigus and Pemphigoid held on January 25, 2023. The meeting brought together patients and care partners, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, doctors, and researchers. The goal of the meeting was to hear from patients about what it’s like to live with rare, autoimmune bullous skin diseases so that all involved can better understand the patient experience.

The “Voice of the Patient” report is designed to help the FDA make informed decisions about potential future therapies for pemphigus and pemphigoid. It can also help pharmaceutical companies design therapies and clinical trials to address the aspects of these diseases that are most important to patients. 

“Following 2023’s successful EL-PFDD meeting, the ‘Voice of the Patient Report’ is a critical next step in the IPPF’s engagement with the FDA and other decision-makers,” said IPPF Executive Director Patrick Dunn. “As we’ve learned, there are significant obstacles facing pemphigus and pemphigoid patients’ access to potential future therapies. To overcome these obstacles, we must empower the voice of a strong coalition of patients, caregivers, researchers, and clinicians so that regulatory agencies and industry partners understand what truly matters to people living with these diseases.”

This initiative was coordinated by a partnership of pemphigus and pemphigoid patient organizations, including the International Pemphigus & Pemphigoid Foundation (USA), PEM Friends (United Kingdom), Association Pemphigus Pemphigoïde France (France), and the Pemphigus/Pemphigoid Friends Association (Japan).

The post Understanding the Unmet Needs of the Pemphigus and Pemphigoid Community first appeared on IPPF.

On behalf of the IPPF Board of Directors and staff, we are excited to announce that Staci White has been appointed as our new President of the Board of Directors. Staci has served as an IPPF Board member since 2020. She has also been active in the IPPF community for many years. 

Staci’s motto is “fearless joy.” She views life’s challenges as avenues for clarity and creativity. In 2011, she was diagnosed with pemphigus vulgaris (PV) after being taken to the emergency room on Memorial Day weekend with wounds/blisters over 85% of her body. Her symptoms, though unrecognized as such by any physician who examined her prior to arriving in the ER, began in the winter of 2010. Staci celebrated seven years in remission on July 20, 2023. It was a hard-fought, five-year journey to remission. She was grounded in faith and surrounded by love each step of the way. Staci believes that PV changed her life in unexpected but beautiful ways.

Staci is an intuitive, mindful, and strategic leader with 29 years of experience with nonprofit, healthcare, and education organizations. She holds a BA in Psychology and a Master’s in Public Administration from Rutgers University, along with a certificate in Diversity and Inclusion from Cornell University, a Lean Six Sigma Green Belt from Purdue University, and she is a Certified Professional Life Coach. Staci currently works for the healthcare network where she was diagnosed with PV as the Director of Student Affairs and Wellbeing at Hackensack Meridian School of Medicine. She is also an adjunct professor at Bergen Community College in New Jersey.

In 2023, Staci became the founder and Chief Coaching Officer for Kitt White Coaching, which specializes in transformational and leadership coaching. Anchored in community service, Staci is a member of Delta Sigma Theta Sorority, Inc., the co-chair for Hackensack Meridian Health’s Women in Leadership Team Member Resource, and a mentor.

The post Meet Our New President of the Board of Directors: Staci White first appeared on IPPF.

This press release was originally published by the PAN Foundation on December 6, 2023.

The PAN Foundation and the International Pemphigus & Pemphigoid Foundation today announced they are launching a new partnership to help people living with pemphigus vulgaris, providing up to $6,600 per year in financial assistance and support services for patients and their caregivers or loved ones.  

Pemphigus vulgaris (PV) is a rare autoimmune disorder of the skin and mucous membranes that causes painful sores and blisters on the skin and mouth. About three in every 100,000 people in the U.S. are living with pemphigus vulgaris, according to the Medscape.

“We are thrilled to partner with the International Pemphigus & Pemphigoid Foundation and expand our support for people living with pemphigus vulgaris,” said PAN Foundation President and CEO Kevin L. Hagan. “For nearly 30 years, the IPPF has led the way with education and support services, and we are grateful to collaborate with them.”

The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

“Pemphigus vulgaris (PV) is the most common form of pemphigus, and it can affect both the skin and mucous membranes. PV does not improve without active treatment and can come with high out-of-pocket costs. We are grateful to join forces with the PAN Foundation to increase patients’ access to financial support, educational resources, and a caring community,” said International Pemphigus & Pemphigoid Foundation Executive Director Patrick Dunn.

Patients who qualify for the PAN Foundation Pemphigus Vulgaris Fund are eligible to receive $6,600 per year in financial assistance. (Sign up for the waitlist to be notified by email when the funds open.)

Eligibility requirements

To get financial assistance for pemphigus patients must:     

• Be getting treatment for pemphigus vulgaris.   
• Have Medicare health insurance that covers the qualifying medication or product.    
• Have an income that falls at or below 400 percent of the federal poverty level.   

About the PAN Foundation  

The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic, and rare diseases with the out-of-pocket costs for their prescribed medications.  

Since 2004, we have provided more than 1.1 million underinsured patients with over $4 billion in financial assistance. Partnering with generous donors, healthcare providers, and pharmacies, we provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Learn more at panfoundation.org.    

The post New Partnership with the Patient Access Network Foundation first appeared on IPPF.

The latest video in our new series, Pass the Mic with Dr. Mike, the Pharmacist is available.

Biosimilars are also known as “follow-on biologics” or “subsequent entry biologics”

The Biologics Price Competition and Innovation Act (BPCI) was introduced by Senator Edward Kennedy in 2007. It was passed by Congress and signed by President Obama in 2010 as part of the Patient Protection and Affordable Care Act (ACA) (Center for Drug Evaluation and Research, 2016). The intent of the Act was to lower prescription costs to patients by having biosimilars priced 25-35% less than innovator drugs.

Biosimilars include large molecule drugs that are most commonly injectables or infused drugs. They are Food and Drug Administration (FDA)-approved copies of the original “innovator” drug product that are allowed to be licensed and approved by the FDA once the innovator product’s patent expires. Well-known oral generic drugs are small molecule drugs and typically taken orally. Biosimilars are large molecule drugs and are typically given via the intravenous or muscular route. The first drug that was FDA-approved as a biosimilar was a version of Neupogen® called ZARXIO in 2015. The most significant biosimilar available for pemphigus and pemphigoid (P/P) patients is the drug rituximab (innovator named Rituxan®), which now has three available approved biosimilar products. 

The concept of “similarity” includes these principles which were enacted and are enforced by the FDA:

1. Any differences between the biosimilar and the innovator products must not be clinically significant.
2. Must be similar in their ability to cause immunogenicity (meaning they have the ability of therapeutic protein products to stimulate an immune response in the patient).
3. Must be similar in their pharmacokinetics (how the drug is absorbed and eliminated by the body).
4. Must be similar in their pharmacodynamics (how the drug affects the body).
5. Must be similar in their safety, purity, and potency.
6. Must be FDA-approved for one or more of the indications that the FDA approved for the innovator product.
7. Most commonly, the biosimilar product’s acquisition cost is 20-30% less than the innovator product, which is supposed to have a cost-reducing impact on insurance companies and patients.
8. Currently, there are over one hundred biosimilars approved or in the process of approval for use in the US. Please see this link for a list of the currently FDA-approved biosimilars and which ones are in the application process with the FDA. (Center for Drug Evaluation and Research, 2023)) 

Cost reduction to the American healthcare system

As of late 2022, there were 39 approved biosimilars of 11 previously approved innovator products, with 22 biosimilars currently available on the market. It is estimated that biosimilars saved over $7 billion in 2021. It has also been shown that patient access to medications has improved for every drug with an available biosimilar. (Association for Accessible Medicines, 2022

Patient out-of-pocket costs

The cost savings impact of biosimilars in the US has not had the expected reducing impact on prices (due to many factors, which will be discussed below). Thus, many regulatory updates to the ACA have been proposed. The main issue has been the creativity shown by the innovator product’s drug makers and the insurance companies to manipulate the market pricing structure to make the most money by forcing patients to use the innovator product or a more expensive biosimilar product, meaning patients may be forced to pay more out-of-pocket than if they were able to use the least expensive biosimilar product.

Traditionally, generic and biosimilar drugs are priced 25-35% less than the innovator product. Insurance companies then pass these lesser acquisition prices to the patients in the form of lower out-of-pocket costs to the patient. However, many innovator product companies offer significant rebates to the insurance company that cause them to prefer these innovator products to the less costly biosimilar products. Patients are then forced to pay higher out-of-pocket costs with the innovator’s product. This innovator product rebate program circumvents the original intent of the biosimilar model concept. There are states and patient support groups advocating to end these practices so that more patients can experience lower out-of-pocket costs, as was intended to be part of the biosimilar concept. 

Prescribing physician

Biosimilars may adversely impact physicians since they may not have control over which products are approved for their patients (innovator products vs. biosimilar products) since individual insurance companies’ strategies vary dramatically. For example, a prescribing physician office with 20 patients that may need rituximab (the innovator product is Rituxan®) as part of their autoimmune blistering disease treatment plan may wind up with five patients on each of the four (one innovator and three biosimilars) available products. This presents a complex situation for the prescribing physician, who may face various concerns and responses from their patients about the drugs they are required to take by their insurance company. 

Insurance companies

Insurance companies have an excellent opportunity to create strategies that can save money for patients by encouraging them to use biosimilars. Alternatively, insurance companies can choose to make more money for themselves by obtaining rebates from innovator brand drug makers. This may then require patients to use the innovator product at a higher cost to the patient. Either way, the process is complex and time consuming for insurance companies and patients, alike. These policies are also very transient and may need to change whenever a new biosimilar product hits the market or as contracts and negotiations change yearly.

Patients and caregivers

The biosimilar concept significantly impacts patients and caregivers since they may be able to save out-of-pocket costs by using the least expensive biosimilar product instead of using the brand-name drug. However, based on some of the above-mentioned strategies, patients may have to pay higher out-of-pocket costs than expected if they are prescribed a drug other than the lowest cost biosimilar. Also, since patients might be on these drugs for a significant period of time, they may be forced to switch between products and experience a change in out-of-pocket costs as insurance companies update their formularies each year. (Note: Each payor has a drug formulary listing the drugs they prefer their patients to use, and which also explains the various extra or lesser costs the patient may qualify for if they do or don’t use the payors preferred formulary drugs.)

Pharmacies

Biosimilars challenge pharmacies since they must order and stock many versions of the same drug. They must arrange for the proper cost-effective purchasing of each product, have the ability to sell it to the insurance company at a reasonable profit, and be able to clinically manage patients on multiple versions of the same drug. Also, Boards of Pharmacy have enacted rules for the use of biosimilars. Typically, most states require a pharmacy to notify and obtain consent from the doctor when a biosimilar is substituted for an innovator product at the request of their payor or as a result of product availability to the pharmacy.

Suggestions for navigating a biosimilar future

For patients and their families involved with drugs for which biosimilars are available, it is important to consider these issues with their physician, insurance company, and pharmacy. The best way to obtain the best financial outcome from the biosimilar concept is to always be on the offensive. This involves knowing these critical facts about biosimilars that may be available. Creating a spreadsheet that includes the following information may be the best way to coordinate this complex data: 

1. Which innovator drugs are currently available as biosimilars for your disease?
2. Contact your insurance company to see which biosimilars or innovator products are on their preferred formulary for your diagnosis.
3. Look up typical acquisition pricing for these drugs online so you know the acquisition cost differences between the innovator product and biosimilars. Less acquisition cost usually equates to less out-of-pocket costs for patients. 
4. For each biosimilar and innovator product that might be an option for your disease and with your payor, determine available financial assistance program options by checking the drug’s website.
5. Ask your prescribing physician which innovator brand or biosimilar they prefer so you can compare with what your payor prefers and its cost.
6. Ask your pharmacist whether these innovator products or biosimilars require special purchasing actions, purchasing contracts, payor contracts, training, or Risk Evaluation and Mitigation Strategy programs. The presence of any of these items may make the innovator or biosimilar product hard to get or not obtainable by your pharmacy.

For more information about biosimilars, visit the following IPPF patient resources:

• https://www.pemphigus.org/wp-content/uploads/BPC_Biosimilars-vs-Generics_OnePager_March-2023-1.pdf
• https://www.pemphigus.org/wp-content/uploads/Biosimilars-What-You-Need-To-Know-508_0.pdf

References

Association for Accessible Medicines. (2022). Generics & Biosimilars https://accessiblemeds.org/sites/default/files/2022-09/AAM-2022-Generic-Biosimilar-Medicines-Savings-Report.pdf

Center for Drug Evaluation and Research. (2016). Implementation of the biologics price competition and innovation act O. U.S. Food and Drug Administration. https://www.fda.gov/drugs/guidance-compliance-regulatory-information/implementation-biologics-price-competition-and-innovation-act-2009

Center for Drug Evaluation and Research. (2023). Biosimilar Drug Information. U.S. Food and Drug Administration. https://www.fda.gov/drugs/biosimilars/biosimilar-product-information

Michael Rigas, PharmD, is an IPPF Board Member and the Chief Clinical Officer, Emeritus of KabaFusion, LLC, in Cerritos, California.

The post Biosimilars 101 for Pemphigus and Pemphigoid Patients first appeared on IPPF.

We’re excited to share a new resource with our community: The IPPF Guide to Pemphigus and Pemphigoid. The guide is intended to provide medically reviewed information relevant to the most common questions people have when first diagnosed with pemphigus and pemphigoid, as well as educational information about ongoing disease management and treatment options.

Through this guide and other IPPF resources, we hope to empower the community with essential knowledge that can make living with pemphigus and pemphigoid much more bearable. In addition to English, Spanish and French translations of the guide are available to read and download on our website.  

*The information in this guide has been reviewed by the Education and Patient Support working group of the IPPF’s Medical Advisory Council. The IPPF does not endorse any drugs, treatments, or products in this
guide. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, discuss all drugs and treatments with the reader’s physician(s) for proper evaluation, treatment, and care.

The post The IPPF Guide to Pemphigus and Pemphigoid first appeared on IPPF.