Tag: Duchenne Muscular Dystrophy

A total of 71 posts are filed under Duchenne Muscular Dystrophy
Michael’s Cause Has Cause for Celebration After Golf Fundraiser
The organization just had their 5th annual UFCW Local 1D/2D Golfing Tournament to raise funds for Duchenne Muscular Dystrophy research.  In… 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
CureDuchenne Applauds the FDA Approval of Marathon’s EMFLAZA (deflazacort) for the Treatment of Duchenne Muscular Dystrophy
EMFLAZA is the First Drug in the U.S. Approved for Use by Patients Age Five and Older with Duchenne Regardless of Genetic Mutation… Continue Reading
CureDuchenne Creates New Program to Improve PT Training and Clinical Trial Education
 It is vital that those caring for children and young adults with Duchenne muscular dystrophy have a thorough understanding of the… Continue Reading
Why Health Insurers Won’t Cover this $300,000-a-year Rare Disease Drug
(Source) — Alison Willis Hoke’s twin sons were among the 12 boys in a key clinical trial that helped get Sarepta Therapeutics Inc.’s… Continue Reading
CureDuchenne Aims for a Treatment for the 87%
The First Pharmaceutical Treatment Approved for Duchenne Muscular Dystrophy Will Treat 13% of Those Affected, CureDuchenne Redoubles Efforts… Continue Reading
RARECast: Discovering the Creative Use of Outrage
When a doctor delivered a devastating diagnosis to Pat Furlong for her two sons with Duchenne Muscular Dystrophy, she refused to sit by and… 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