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A total of 191 posts are filed under Awareness
“Little Big Shots” Star, Gavin R. Stevens, Talks Foundation for Leber’s Congenital Amaurosis (LCA)
Gavin Stevens, who appeared on this season’s “Little Big Shots,” was born with a very rare genetic retina condition called Leber’s… Continue Reading
Yankees Baseball Legend Bernie Williams Raises Awareness of Devastating Lung Disease – IPF – in Honor of his Dad
New York Yankees all-time great Bernie Williams is teaming up with Boehringer Ingelheim to raise awareness of a lung disease called… Continue Reading
Familial Hypercholesterolemia
Access Health to Air New Segment on Familial Hypercholesterolemia on 3/29
Don’t miss tomorrow’s segment on Access Health! FH is short for Familial Hypercholesterolemia. It is an inherited disorder that leads to… Continue Reading
Finding Fabry: How One Diagnosis Can Save an Entire Family
April is National Fabry Disease Awareness Month Jack Johnson got a lucky start in life thanks to a small town doctor in Missouri who treated… Continue Reading
Football Star, Roman Braglio, Joins Fight for Rare Disease Awareness
Former Maryland defensive end Roman Braglio will make his upcoming NFL Pro Day a platform to inspire the rare disease community with hope… Continue Reading
maltese_ rare
25,000 Maltese Citizens Suffer from a Rare Disease
(SOURCE) The Maltese government is promoting cooperation in research into rare diseases while holding the presidency of the Council of the… Continue Reading
The Balancing Act to Air Segment on Alpha-1 Antitrypsin Deficiency
Imagine– a rare disease that’s rarely diagnosed– because it mimics so many other diseases. We’re talking about Alpha-1 Anti-TRIP-sin… Continue Reading

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