Rare Diseases Information and Help

Reimbursment for out of pocket medical expenses paid after applying for SSI/SSDI and am now approved?

admin — Fri, 30 Dec 2011 08:13:37 +0000

I applied for SSI and SSDI in March of 2009 due to a 1 in 1 Million rare disease I have, that has no known cause.It’s called Idiopathic Pulmonary Arterial Hypertension (IPAH) It causes the right side of my heart to increase in size, due to the narrowing of my pulmonary arteries; therefore the blood [...]

Some Rare Skin Allergies Symptoms

admin — Thu, 29 Dec 2011 15:19:13 +0000

Most of the readers would know what skin allergies are. Reactions like skin redness, swellings, red patches, itching, and others are symptomatic of all common skin allergies.The article below discusses some rare skin allergies and their symptoms:1. Acute Uticaria or Hives- It is a skin rash caused by reaction to allergens, thus producing histamine and [...]

Next Generation of PHA Leaders – Part 1

admin — Thu, 29 Dec 2011 01:05:27 +0000

This four-part video is a round table discussion between several of PHA’s emerging leaders. This was the final general session at PHA’s 2008 Conference. Hear their advice on how everyone can help raise awareness of pulmonary hypertension through media, fundraising and advocacy.

Pepsi Refresh – Global Genes Fund

admin — Wed, 28 Dec 2011 01:47:26 +0000

The Global Genes Fund is a platform dedicated to promoting rare disease research initiatives that are focused on developing therapies and treatments within these childrens lifetimes. This platform will be a clearinghouse for innovative, collaborative research that will impact the millions of children affected by rare diseases and disorders. Vote Today! www.refresheverything.com/fund-hope-for-sick-kids

How to Identify and Control Pests and Diseases in your Garden

admin — Tue, 27 Dec 2011 21:59:50 +0000

A number of pests and diseases are going to occur in your garden but there are ways to keep these to a minimum. Choose good quality plants avoiding soft bulbs, lanky bedding plants and unhealthy or disease-ridden shrubs and perennials. Cut out dead wood and remove overcrowded branches to ensure adequate ventilation. Paint any large [...]

Why is Prophylaxis Important For Hemophiliacs?

admin — Tue, 27 Dec 2011 12:58:28 +0000

In recent years may have benefited from treatment with factor VIII for haemophilia you suffer, given as an injection every two days or three times a week. This method of administration is known as prophylaxis and may help prevent bleeding before their onset.Therapy with factor VIII is a good way to treat bleeding. However, once [...]

An American soldier was captured by the Germans during the war?

admin — Tue, 27 Dec 2011 01:16:23 +0000

A couple of weeks went by, and it was discovered he had a rare disease in his limbs. The Germans told him “we are sorry, but we have to amputate your right arm” The soldier replied “if you must, but will you send it back to the states so it will be buried in my [...]

Journeys Luncheon – Donna Pederson – Part 2

admin — Mon, 26 Dec 2011 18:35:52 +0000

A conference tradition! From PHA’s 2008 Conference, watch as Myung Park, MD and Donna Pederson share their journey with pulmonary hypertension.

“Mercy Medical Airlift: Compassion Takes Flight” documentary trailer

admin — Mon, 26 Dec 2011 00:40:19 +0000

Featuring an appearance by Charlie Daniels, this is the one minute trailer for our documentary, “Mercy Medical Airlift: Compassion Takes Flight,” about the nation’s largest and oldest nonprofit that coordinates and provides charitable medical air transportation for needy families and wounded veterans. Watch either the full one hour, or 22 minute, version for free at [...]

Moira Liljeström, Fundacion FOP, Fibrodysplasia ossificans progressiva, Argentina

admin — Fri, 23 Dec 2011 03:02:37 +0000

(En español) Moira was a participant in the 5th European Conference on Rare Diseases (ECRD) Krakow, Poland 2010. Moira is a member of Fundacion FOP in Argentina.

TriVita Nopalea Review – All Natural Pain Relief

admin — Wed, 21 Dec 2011 22:16:03 +0000

TriVita is a company based in Scottsdale Arizona, and has been offering health and wellness products for over 10 years.They are debt free and growing like crazy at this time.Nopalea is a liquid drink that primarily offers an anti inflammatory health benefit.Chronic pain can be a sign of inflammation, which this product seems to improve [...]

Is it a sin to destroy the diseases that god created?

admin — Wed, 21 Dec 2011 16:57:57 +0000

There were and still are christian and muslim groups who oppose vaccinations of deadly viruses because it interferes with god’s creation, like the polio and recent cervical cancer vaccines. On the other hand, why do some theists think it’s ok to eliminate the viruses god created? Interior Castle- Your god’s not a full creator then, [...]

Is public health care off the table?

admin — Wed, 21 Dec 2011 16:49:54 +0000

More at therealnews.com Hickey: A public health insurance plan may not be on the table.

Beauty Is In The Eyes Of The Beholder

admin — Wed, 21 Dec 2011 09:21:11 +0000

For those of you old enough to remember Flip Wilson, you will remember a character of his, Geraldine. Geraldine is described as “a wise-cracking smart-ass with an unseen boyfriend named Killer.” One of Geraldine’s favorite sayings was, “Beauty is in the eye of the beholder, and you just ain’t beholdin’ hard enough.” I miss Geraldine. [...]

MITO SISTERS

admin — Tue, 20 Dec 2011 20:50:13 +0000

raising awareness of mitochondrial diseases by two sisters who suffer from mitochondrial disease

11/14 part.(english sub.) First Regional Workshop “CCSVI and MS” – speaks: Dr. F. Salvi

admin — Tue, 20 Dec 2011 15:45:33 +0000

dr. Fabrizio Salvi, Head of the Centre for Rare Diseases and Neuroimmunitarie, (il Be.Ne.) Bellaria Hospital, Bologna, He’s the first neurologist to support Zamboni in clinical trials on MS patients, as well as the leading expert in the neurological ccsvi’s assessment Sassari, Sardinia c/o Hotel “Il Vialetto” – Room “Piazza dItalia” april 24 2010 Translation [...]

What diseases did people die from during the civil war?

admin — Tue, 20 Dec 2011 06:30:51 +0000

what is a disease that was common to cause the death of children then. PLeasE aNsweR tHis queStIon

CheckOrphan NewsFlash January 11, 2010

admin — Sun, 18 Dec 2011 22:26:20 +0000

CheckOrphan NewsFlash for Monday, January 11, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: Johns Hopkins Children’s Center, H1N1, Johns Hopkins, sickle cell disease, asthma, HIV, Swine flu, H1N1 treatment, tuberculosis, birth weight, Johns Hopkins Kimmel Cancer Center, leukemia, chronic myeloid leukemia, Imatinib mesylate, Gleevec, [...]

Prune Your Tomato Garden to Fight Diseases

admin — Sat, 17 Dec 2011 02:49:33 +0000

Pruning is a great way to keep tomato diseases at bay. In this way, if disease should hit, it will be that much farther from the main stem. Another reason for this is that it lowers the shock value to the plant. If the sucker is big, then your tomato plant will handle this small [...]

What does this mean? is it a good thing what he said?

admin — Fri, 16 Dec 2011 17:10:23 +0000

I have the greatest guy friend in the world. I’m a late bloomer(didn’t reach puberty until 23) at 23 because of a rare disease and he knows this. He also knows that I am physically and emotionally attracted to him because I told him. The sexual and emotional attraction has been too strong to bear [...]