MDA's Power of Collaboration in Shaping Advocacy and Policy for Neuromuscular Diseases: Paul Melmeyer, MPP

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Ahead of the 2024 MDA Conference, the vice president of public policy and advocacy at the Muscular Dystrophy Association talked about conference advocacy collaboration, access to treatments, and the state of healthcare. [WATCH TIME: 6 minutes]

WATCH TIME: 6 minutes


"What the conference also allows us to do is convene with the clinicians—those who are diagnosing individuals with neuromuscular diseases and prescribing new treatments. Oftentimes, we engage with them during sessions with our care center directors or those focused on gene therapies, both within the conference sessions and beyond."

On March 3rd, 2024, the Muscular Dystrophy Association (MDA) will host its yearly Clinical and Scientific Conference in Orlando, Florida. The event brings together scientific and medical professionals, patients, and advocacy groups, providing a platform to share advancements and collaborate on addressing challenges and requirements across diverse patient populations with neuromuscular disorders.

Addressing these challenges may be completed through health policy, a realm well-versed by Paul Melmeyer, MPP, the vice president of public policy and advocacy at MDA. Revisions in both federal and state policies hold the potential to enhance accessibility to diverse healthcare services, facilitate clinical trial funding and enrollment, and eliminate obstacles that pose challenges for both patients and physicians.

Recently, NeurologyLive® sat down with Melmeyer to explain how the neuromuscular advocacy collaborative leverages collective voices to drive effective public policymaking for those with neuromuscular conditions. In an era in which FDA approvals for neuromuscular disease are at an all-time high, he talked about some specific access challenges that are hindering the community, and how the MDA is addressing these issues. Additionally, Melmeyer spoke about how the MDA Conference serves as a catalyst for cross-stakeholder collaboration, influencing initiatives and policy changes in the neuromuscular disease community.

Registration for the 2024 MDA Conference is now open! The meeting is set to be held at the Hilton Orlando, in Orlando, Florida, from March 3 to 6, 2024. To register and for more information, head to www.mdaconference.org.


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