Patient Organizations - Duchenne Muscular Dystrophy
Prosensa works closely together with a number of patient organizations in the therapeutic areas where the company is active. Especially in the field of Duchenne, Prosensa has established strong partnerships with organizations which take care of the interests of patients and their families.
Patient Organizations
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AFM
Created in 1958 by a group of patients and their families, and recognized as being of public utility in 1976, AFM (French Muscular Dystrophy Association) has a single objective: to defeat neuromuscular diseases that are devastating muscle-wasting diseases. It has set itself two missions: curing neuromuscular diseases and reducing the disabilities they cause.
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Aktion Benni & Co e.v.
After Conny and Claus Over (Kreis Neuwied, Rheinland-Pfalz, Germany), parents of Benni, had been confronted with the diagnosis of their son´s disease, they decided to take action against this desperate situation. They founded "Aktion Benni & Co" in June 1996, in order to intensify investigation to cure Duchenne Muscular Dystrophy and to provide financial support. Many affected families from the whole of Germany have joined them from that moment.
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Charley’s Fund
Charley’s Fund directs resources into the hands of researchers who have the best shot at developing a treatment or cure for Duchenne Muscular Dystrophy. Their goal is to cure DMD in time to save Charley’s life and the lives of thousands of boys like him.
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CureDuchenne
CureDuchenne is a non-profit organization founded in 2003 by Debra and Paul Miller, parents of a Duchenne boy. CureDuchenne’s vision is to cure Duchenne Muscular Dystrophy. CureDuchenne aggressively seeks the most promising, leading edge research breakthroughs and expedites them to the clinical trial process. The ultimate goal is give the boys that have Duchenne a chance to live a normal life by expediting the cure and/or the availability of therapies that can give quality of life to Duchenne boys, much like insulin does for diabetics.
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Duchenne Parent Project
A Dutch foundation founded by parents of children that suffer from Duchenne Muscular Dystrophy in the Netherlands, aiming at research acceleration in order to heal or to find a treatment for Duchenne Muscular Dystrophy and to provide information to everybody involved with Duchenne Muscular Dystrophy patients.
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United Parent Projects Muscular Dystrophy (UPPMD)
United Parent Projects Muscular Dystrophy (UPPMD) is owned and managed by parent project organizations set up by parents of children with Duchenne Muscular Dystrophy in many different countries all over the world. These national projects are run by parents, for parents.
Visit the United Parent Projects Muscular Dystrophy (UPPMD) website