Subscribe to
this category

Rare Community

A total of 553 posts are filed under Rare Community
Frank Rivera, Sarcoidosis Advocate, Shares Cautionary Tale on the Value of Awareness
It’s not an uncommon occurrence for a rare disease patient to be misdiagnosed. It happens every day. When it takes an average of 7 years… Continue Reading
Disorder: The Rare Disease Film Festival Announces its Call to Entries for their Inaugural Festival
Set to take place in Boston on October 3, 2017, the festival  encourages filmmakers whose work addresses issues of concern to rare disease… Continue Reading
Spreading Awareness for Bohring-Opitz Syndrome
This year marks the third annual Bohring-Opitz Syndrome (BOS) Awareness Day. On April 6t​ h​, people from around the world will shine… Continue Reading
“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
Leader in Cure, Care and Community for Duchenne Muscular Dystrophy CureDuchenne Launches New Website
CureDuchenne, the leading nonprofit focused on finding a cure for Duchenne muscular dystrophy, launched a new website today… 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

Follow us on Twitter

Upcoming Events

Sep 14

Rare Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

Rare Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

Rare Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

Rare Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm