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Navigating the Long Journey to a Rare Disease Diagnosis
Misdiagnoses are common in the neuromuscular disease community. Here are tips for navigating the journey to a rare disease diagnosis.
Tags: Amy, Featured Content, Healthcare, MDA Care Centers, MDA Peer Connections, MDA Resource Center
2023 MDA Clinical & Scientific Conference Keynote Speaker – FDA’s Peter Marks, M.D., Ph.D.
The Muscular Dystrophy Association (MDA) is excited to welcome Peter Marks, M.D., Ph.D. as the Keynote Speaker at the MDA 2023 Clinical & Scientific Conference. His presentation will take place…
Introducing MDA Connect
At MDA, we are proud and excited to announce the launch of a new service that will bring us closer to our community. Through our Resource Center and our team…
Tags: Community, MDA Resource Center, Resources
2023: Year of the Volunteer
Leading the way as the #1 Voluntary Health Organization for over 70 years, at MDA volunteers are at the forefront of our legacy. Families are at the heart of our…
Tags: Volunteers, Year of the Volunteer
Celebrating Our 2022 Advocacy Accomplishments
From passing key legislation to our Virtual Summit and Hill Day, 2022 has been an exceptional year for MDA advocates. You raised your voices and key decisionmakers heard all of…
MDA Honors the Life and Legacy of Victor Wright
Victor Wright Hope for a longer, more independent life is now becoming a reality for patients with muscular dystrophy and related diseases. Many stakeholders have played a vital role over…
Tags: Community
Quest for Success: Peter Saleh
As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to present the final instalment in our 2022 blog series: “Quest…
Tags: College, Community, Education, Employment, Quest for Success
Perspectives on Gene Therapy Products for Neuromuscular Disease
On Nov. 15, the US Food and Drug Administration (FDA)’s Center for Biologics Evaluation and Research (CBER) Office of Tissues and Advanced Therapies (OTAT) hosted a patient-focused drug development (PFDD)…
Research Study Alert: Survey Examining Transfers of Care in the SMA Community
Researchers at Brandeis University are seeking adults living with spinal muscular atrophy (SMA) to participate in a survey about their experiences with transition planning and transfers of care between pediatric and adult…
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Clinical Trial Alert: Medical Device Feasibility Study for People with Paralysis
Researchers at Synchron are seeking individuals living with paralysis due to various causes, including muscular dystrophy, stroke, spinal cord injury, amyotrophic lateral sclerosis, and spinal muscular atrophy, to participate in a…
Tags: Clinical Trial Alert