RARECast: Abeona Advancing Pipeline of Gene Therapies for Rare Diseases

Gene therapy has the promise of radically changing…

University of Arkansas to Lead $1.4M Study on Rare Disease
The University of Arkansas will use a $1.4 million grant to study the origin of Leigh’s Disease, a rare and incurable disease that affects… Continue Reading
Woman With Rare Condition Says Social Media Saved Her Life
(Source) An Evansville woman suffering from an extremely rare condition feels as if Facebook saved her life. Natalie Embry’s condition is… Continue Reading
2016 RARE Champion of Hope Dr. Phil Reilly to Keynote Upcoming Rare Disease Meeting in Washington, DC
The EveryLife Foundation for Rare Diseases is convening its annual Community Congress meeting in Washington, D.C. on November 16th. The… Continue Reading
FDA Helps Fund 21 Early Phase Trials for Rare Disease Treatments
(Source) by Zachary Brennan The US Food and Drug Administration (FDA) on Monday announced it is awarding $23 million in research grants for… Continue Reading
Young Man with N.O.R.S.E Experiences Sudden Seizures And Long Rehabilitation
By Luke Boulianne It began on January 11th, 2014, shortly after returning from a ski trip in Quebec. I immediately began feeling ill and… Continue Reading
Spark Therapeutics Launches Initiative to Improve Access to Genetic Testing for Inherited Retinal Diseases
Spark Therapeutics (NASDAQ: ONCE) will provide physicians and eligible patients access to genetic testing and counseling for more than 30… Continue Reading
Join RDLA for Their October Legislative Webinar/Conference Call
Wednesday, October 26th: 1:00 pm to 2:00 pm EST Agenda: Lymphedema Treatment Act:Patricia Egan, Interim Executive Director & CEO, National… Continue Reading