The latest news from PTC

Elijah doesn't let Duchenne hold him back.

Aida and her husband founded the Lebanese Association for Neuromuscular Diseases (L.A.N.D.) in 2011, following their son Wafik’s diagnosis with Duchenne muscular dystrophy. At that time, they encountered a lack of information and support for their family and others living with neuromuscular diseases in Lebanon. They realized there was a need for a community organization…

In this episode, we meet three fantastic, young men who live with Duchenne muscular dystrophy, and who, by following their interests, have developed exciting lives and careers. Björn Jönsson is self-employed with a strong commitment to the Swedish Foundation for Muscular Dystrophy Research, among other causes. He also works with gaming development under the motto…

ASCADIM provides physical, psychological, and social care to people with muscular dystrophies in Southern Brazil. The organization was created based on insights from parents on the despair they felt following diagnosis and their desire for more and trusted information. Via ASCADIM, patients and their families can access vital support, guidance, and free physical therapy –…

Sebastien is determined to improve accessibility for people who live with a disability.

In the United Arab Emirates (UAE), people with special needs and disabilities are considered ”people of determination.” This designation is used in recognition of their achievements in different fields. Abdulla – who is 37 years old and living with Duchenne in the UAE – is one such incredible person who demonstrates determination in all parts…

Pedro is from Campo Grande, Brazil and is living with Duchenne muscular dystrophy (DMD). He has many passions and interests that keep him energetic and happy. His love of writing has led him to a career in journalism, and he has even published two poetry books. Singing and composing are core passions and he has…

Patrick – a.k.a. “Tick” – from São Paulo, Brazil, loves music and enjoys performing on stage. He is also living with Duchenne muscular dystrophy – but that does not define him. Instead, Tick is defined by his personality and his dreams. Watch the video to learn about Tick and how he is making his dreams…

B.J. Viau is a lifelong Huntington’s disease (HD) advocate and has served as Board Chairman of the Huntington’s Disease Youth Organization (HDYO). The following article was contributed to the PTC Newsroom to help spread awareness about HD. Follow him on Twitter @BJsView. Do you have a rare disease story to share? Contact our news team…

At PTC, we’re passionate about supporting those living with rare diseases, even when they live in the most inaccessible parts of the world. Leandro, a PTC colleague in Brazil, plays a key role in educating physicians in remote areas along the Amazon River. He shares information about Duchenne muscular dystrophy (DMD), and has helped make…