Pardon Our Dust: RAREDaily Under Construction

Thank you for visiting! Please continue to submit…

Notre Dame Football Player Support Rare Disease Community Through Bowling Event
The Notre Dame football team traded in their football cleats for bowling shoes Sunday at the Strike & Spares Event Center in Mishawaka.… Continue Reading
Rare Patient Starts Card Project for Hospitalized Kids
SOURCE Jen Rubino knows how it feels to be sick and in the hospital at a young age. The 22-year-old was diagnosed with a rare childhood bone… Continue Reading
New Data Show Survival Improvement with Adcetris in Hodgkin Lymphoma Patients
by Mathew Shanley for Rare Disease Report Earlier today, Takeda and Seattle Genetics announced promising results from its Phase 3 ECHELON-1… Continue Reading
Doctor, CSO, and Father: Hunting for Answers for Fragile X Children
Dr. Michael Tranfaglia serves as Medical Director and Chief Scientific Officer of FRAXA, a nonprofit organization based in Newburyport,… Continue Reading
CheckRare: FDA Approves Haegarda to Treat HAE
The U.S. Food and Drug Administration today approved Haegarda, the first C1 Esterase Inhibitor (Human) for subcutaneous administration to… Continue Reading
Patient-Inspired Research Uncovers New Link to Rare Disorder
Meeting a young patient with Zellweger syndrome, a rare, life-threatening genetic disease, started a scientific investigation that… Continue Reading
NPR: A Couple’s Quest To Stop A Rare Disease Before It Takes One Of Them
by Rae Ellen Bichell In 2010, Sonia Vallabh watched her mom, Kamni Vallabh, die in a really horrible way. First, her mom’s memory… Continue Reading
be-a-guest-blogger

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 - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

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

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

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