Scleroderma Info

Because scleroderma is such a rare disease, there is a chance that some emergency service professionals haven’t come across a patient with the condition. They may not understand some of the intricacies of the disease and how best to approach caring for the patient.

The Scleroderma Foundation has released a booklet for emergency medical responders to help them better understand how to manage scleroderma patients. It highlights some of the challenges they may face, e.g., the use of a pulse oximeter may not work accurately if the patient is suffering from Raynaud’s phenomenon or pulmonary hypertension.

Source: Scleroderma News

Scleroderma Foundation YouTube Channel

noreply@blogger.com (Anonymous) — Fri, 31 Mar 2017 20:30:00 +0000

Check out the Scleroderma Foundation YouTube Channel

Scleroderma Foundation YouTube Channel

Make Your Voice Heard on Key Scleroderma Funding

noreply@blogger.com (Anonymous) — Fri, 17 Mar 2017 20:27:00 +0000

Early each year, the United States Senate crafts an annual Department of

Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP).

In recent years, the PRMRP funded nearly $10 million in meritorious and meaningful scleroderma research projects. Research on the underlying mechanisms of scleroderma is showing relevance to all fibrosis, which occurs at higher rates among individuals who serve in the military and our veterans. The Senate included “scleroderma” as a condition eligible for study during the current year, FY 2017, and it is important that we thank key Senators on behalf of the community and ask for their support again for FY 2018.

Senators are currently working on the FY 2018 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of scleroderma in the DoD PRMRP’s eligible conditions list in FY 2018.”

Follow this link to learn more and reach out to the senators in your state.

White House Proposes Cutting $6 Billion from the National Institutes of Health Budget!

noreply@blogger.com (Anonymous) — Thu, 16 Mar 2017 16:08:00 +0000

Attention Americans, the budget proposed by the White House cuts $6 billion from the budget of the National Institutes of Health (NIH). That is $6 Billion dollars, much of it being cut from medical research. The proposal phrases it as follows: "[The Budget]...rebalances Federal contributions to research funding." "[The Budget]...helps focus resources on the highest priority research." That sounds foreboding for rare diseases such as Scleroderma.

We cannot stand by and let this happen, especially us! We need to raise our voices and call our representatives and tell them this cannot happen and tell them why. We need to raise Scleroderma awareness in Congress and in the White House! Tell them your stories, your families' stories, your friends' stories, etc. Tell Congress BEFORE they vote on the budget! Take action now!

Take a look at the NIH website to see what they do https://www.nih.gov/

Call and email all your Congressional Representatives. If you don't know who they are follow these links to find out:

House of Representatives:
http://www.house.gov/representatives/find/

Senators
https://www.senate.gov/senators/contact/

A Glimpse at the Business of Scleroderma

noreply@blogger.com (Anonymous) — Fri, 10 Mar 2017 22:00:00 +0000

Global Scleroderma Diagnostics and Therapeutics Market is Expected to Reach US$3,663.7 mn by 2024

Corbus to Present Promising Data on Resunab as Systemic Sclerosis Treatment

noreply@blogger.com (Anonymous) — Fri, 10 Mar 2017 04:00:00 +0000

Corbus Pharmaceuticals will present results showing that Resunab (JBT-101), the company’s cannabis-derived treatment for systemic sclerosis (SSc), can trigger specific molecular pathways which resolve inflammation and halt fibrosis.

Rare Disease Day Highlights Need for More Research Into Scleroderma

noreply@blogger.com (Anonymous) — Fri, 10 Mar 2017 03:58:00 +0000

Last week’s Rare Disease Day had one overarching topic: research! Rare diseases are often overlooked by governments around the world when it comes to financing important research. They tend to use taxpayer dollars to fund research into more well-known diseases.

Growing Lungs in a Dish...

noreply@blogger.com (Anonymous) — Wed, 21 Sep 2016 15:34:00 +0000

Growing Lungs: Scientists Are Using Stem Cells to Try and Grow Human Lungs in a Dish

New Show Idea!

noreply@blogger.com (Anonymous) — Mon, 19 Sep 2016 01:15:00 +0000

We need a version of the show Undercover Boss but where an insurance company CEO visits active disability policy holders who are about to be denied continued benefits.

TED: Timothy Ihrig: What we can do to die well

noreply@blogger.com (Anonymous) — Thu, 15 Sep 2016 01:24:00 +0000

The healthcare industry in America is so focused on pathology, surgery and pharmacology — on what doctors "do" to patients — that it often overlooks the values of the human beings it's supposed to care for. Palliative care physician Timothy Ihrig explains the benefits of a different approach, one that fosters a patient's overall quality of life and navigates serious illness from diagnosis to death with dignity and compassion.

Orphan Drug Designation Granted to Nintedanib for Treatment of Systemic Sclerosis, including Associated Interstitial Lung Disease

noreply@blogger.com (Anonymous) — Fri, 09 Sep 2016 19:34:00 +0000

Orphan Drug Designation Granted to Nintedanib for Treatment of Systemic Sclerosis, including Associated Interstitial Lung Disease

Global Scleroderma Initiative

noreply@blogger.com (Anonymous) — Mon, 05 Sep 2016 00:55:00 +0000

Hello All!

Some of you are aware that I have been talking about starting a global Scleroderma organization focused on patients, providing information to patients about treatment options and research from around the world! This is a global disease and we need a global solution. Communication is the key to success. Communication globally between patients, communication globally between patients and doctors, communication globally between doctors and other doctors and communication globally between researchers and all of the above. I want this organization to be a central source for global resources and information on Scleroderma.

If you are interested in volunteering, please let me know at sclerodermaonline@gmail.com and how you think you would best be able to contribute. I would like at least one volunteer from as many different countries as possible. As I am only fluent in English, with some abilities in Spanish and German, I would need you to speak enough English to be able to communicate with me. As we grow, information will be made available in as many languages as possible and perhaps I'll improve on the languages I know and learn a few new ones along the way. :-)

Also, here are some names for the organization that I and some of you have already come up with and that are not currently in use to the best of my knowledge. Please vote or comment on them or make more name suggestions:
Global Scleroderma Community
United Scleroderma International
International Scleroderma Initiative
International Scleroderma League
Global Scleroderma Outreach
International Scleroderma Coalition
International Scleroderma Alliance
International Scleroderma Association
International Scleroderma Society
International Scleroderma Guild

So, spread the word. Share a link to this website with ALL your friends, family, coworkers, etc. from around the world! http://www.sclerodermainfo.com

Check us out on:
Facebook: http://fb.me/SclerdermaInfo
Twitter: @SclerodermaO or click here: https://twitter.com/sclerodermao

The Mighty - Dealing with Chronic Illness Together

noreply@blogger.com (Anonymous) — Mon, 02 May 2016 01:33:00 +0000

Understanding Scleroderma’s ‘Social Network’ May Lead to New Treatments

noreply@blogger.com (Anonymous) — Fri, 04 Mar 2016 17:06:00 +0000

Michael Whitfield, PhD of Dartmouth’s Geisel School of Medicine

We found that a common link exists between the fibrosis in different organs affected in scleroderma, specifically skin, lungs, GI tract, and peripheral blood cells. That common link is a certain type of cell of the innate immune system that we think is driving the disease. The innate immune system consists of the immediate responses that the body has to an injury or infection.

Risk of Pulmonary Embolism and Deep Venous Thrombosis in Systemic Sclerosis

noreply@blogger.com (Anonymous) — Wed, 10 Feb 2016 16:07:00 +0000

I wish this study had come out before my Southeast Asia trip as I am recovering from 4 pulmonary emboli which probably started as a deep vein thrombosis after my flight to SE Asia.

"Risk of Pulmonary Embolism and Deep Venous Thrombosis in Systemic Sclerosis"

Link to News Story: http://sclerodermanews.com/2016/02/04/systemic-sclerosis-patients-threefold-risk-venous-thromboembolism/

Link to actual scientific paper: http://onlinelibrary.wiley.com/doi/10.1002/acr.22673/abstract

4th Systemic Sclerosis (Scleroderma) World Congress

noreply@blogger.com (Anonymous) — Sat, 30 Jan 2016 03:24:00 +0000

4th Systemic Sclerosis World Congress, February 18-20, 2016

Study shows path to 'dial down' autoimmunity without compromising immune response...

noreply@blogger.com (Anonymous) — Thu, 21 Jan 2016 02:53:00 +0000

A new study led by scientists at The Scripps Research Institute (TSRI) shows how dangerous autoimmune responses, seen in diseases such as lupus and multiple sclerosis, might be "dialed down" without compromising the immune system's ability to fight viruses and bacteria.

A Powder Regrows Fingers, Now Thigh Muscle for Marine...

noreply@blogger.com (Anonymous) — Sat, 26 Dec 2015 07:43:00 +0000

A substance extracted from pigs has allowed Marine Corporal Isaias Hernandez to regain much of the muscle he lost to a mortar explosion while serving in Afghanistan.

FDA approves new orphan drug...

noreply@blogger.com (Anonymous) — Wed, 23 Dec 2015 08:42:00 +0000

FDA approves new orphan drug to treat pulmonary arterial hypertension.

On December 21, the U.S. Food and Drug Administration approved Uptravi (selexipag) tablets to treat adults with pulmonary arterial hypertension (PAH), a chronic, progressive, and debilitating rare lung disease that can lead to death or the need for transplantation.

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