End Duchenne eNews: Appreciating Parents
Catch up on the latest research and community updates in this month's End Duchenne eNews. Also meet our Featured Voice for May, 12-year-old Jack Knight.
2013 Connect Conference - Agenda Now Available
PPMD’s Annual Connect Conference will be here before you know it!
This summer we return to Baltimore, Maryland at the beautiful Marriott Waterfront with our most exciting and important agenda yet focusing on Duchenne: Better, Faster, Now!. Check out who is presenting when.
Drisapersen Update webinar with GSK
The purpose of the webinar is to update the Duchenne community about Phase II clinical trial results for GSK’s drisapersen drug for the treatment of Duchenne. GSK investigator John Kraus will present and answer submitted questions. PPMD, CureDuchenne, and MDA will co-sponsor this webinar.
DuchenneConnect Year-End Report
We had a busy and exciting year as we continue to expand our services to patients and families, as well as to researchers and clinicians. A big “thank you” to everyone who registered on DuchenneConnect in March - we had 92 new patient registrations, our highest month ever!
New Mobile App - Locate Duchenne Clinical Trials
PPMD is thrilled to launch Duchenne Central! This new app for your smartphone allows you to search for Duchenne clinical trials and clinics near you or near a specific location. You can also keep track of the latest news, bookmark items, and share with family and friends. Keep your family in the know in real time.
New PPMD White Paper
PPMD is proud to share an advance copy of Putting Patients First: Recommendations to speed responsible access to new therapies for Duchenne, a white paper outlining recommendations to speed responsible access to new therapies for Duchenne.
We are optimistic that Putting Patients First will provide guidance for the FDA and other regulatory agencies as they continue to understand Duchenne and this community’s need for accelerated approval.
DOD will provide $3.2 million to the Department of Defense Duchenne Muscular Dystrophy Research Program (DMDRP)
The Department of Defense just announced that the Defense Appropriations Act will provide $3.2 million to the Department of Defense Duchenne Muscular Dystrophy Research Program (DMDRP). In these tightening fiscal times, the continuation of this program is a testament to the advocacy of the Duchenne community on Capitol Hill. PPMD is thrilled by the announcement and proud of PPMD’s President Pat Furlong who serves as Chair of Congressionally Directed Medical Research Program in Duchenne.
Learn about the significance of PPMD's recently published white paper and how it will help us achieve our ambitious advocacy agenda.
May 9, 2013 | Read More