Join us in making the voice of Rare diseases heard
29 february
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2016 events
Tell your story!
WHEN I WAS DYING
Elizabeth Hutton - United Kingdom
WHEN I WAS DYING …..I shouldn’t imagine there are many people who are still here to be able to tell a tale with the above title!Background:For many years I suffered with periods of dreadful ‘flu-like symptoms,
The day my life changed
Zane Beaty - United States
I was diagnosed with a severe case of Superior Mesenteric Artery Syndrome in Austin, TX on 11/26/2010. I spent three weeks in three hospitals and finally had a friend pick me up nearly dead and drive
Scleroderma at bay
Karen Cohen - United States
Diagnosed 12 yrs ago with Scleroderma & polymiositis overlap. Until very revently was able to work as Flight Attendant, despite sclerodactyly, digital ulcers, pulmonary hypertension & raynaud syndrome.