Access, Impact, and Connection at the MDA Clinical & Scientific Conference

MDA National Ambassador Lily Sander at the 2026 MDA Clinical & Scientific Conference

The annual MDA Clinical & Scientific Conference is the largest global gathering of leading experts dedicated to the advancement of care and research for people living with neuromuscular disease (NMD). Each year, neurologists, researchers, industry partners, and patient advocates convene to share the latest scientific breakthroughs, current clinical trials, and evolving treatment landscape as they build partnerships and collaborations that have a very real impact on turning scientific innovations into approved therapies.

The conference isn’t just for the professionals. In fact, access to cutting-edge information and the opportunity to form impactful connections is a valuable opportunity for community members. The conference also offers virtual access, making it possible for people living with NMD to gain insight into the latest research, care, and advocacy initiatives. Whether traveling to attend the conference in person or participating remotely, the MDA Clinical & Scientific Conference provides an opportunity for community members to witness the tangible and life-changing progress being made in research and clinical care.

Collaborations that are changing lives

“The MDA Clinical & Scientific Conference is important to the neuromuscular disease community because it is a tangible symbol of hope. It brings together scientists advancing treatments and clinicians dedicated to providing more effective, compassionate care,” says MDA National Ambassador Lily Sander, who attended last year’s conference. “The collaborative nature of the conference is especially meaningful, as researchers, physicians, and allied health professionals combine their expertise, exchange ideas, and engage in interdisciplinary conversations that ultimately improve the lives of patients.”

Lily speaking at the 2026 conference.

Lily, who lives with Charcot-Marie-Tooth (CMT), addressed the over 2,400 attendees at the opening session with an impactful speech about daily living with CMT. She met and connected with experts across the field of neuromuscular disease research and shared her own journey.

“The experience was both incredibly rewarding and surreal,” Lily says. “It gave me the opportunity to reflect on my own experience and put into words just how much these clinicians, researchers, and healthcare professionals mean to our community. Being able to share the patient perspective with the people working every day to improve our lives was an honor.”

Impactful connections

In addition to serving as the largest gathering and collaboration of NMD experts in the world, the conference also features a robust exhibit hall, teaming with industry partners, biopharmaceutical companies, and patient advocacy organizations. Exhibitors showcase innovative treatments, trial updates, and community resources.

Cienna Ditri, a rare disease advocate, social media influencer, and President of the Periodic Paralysis Association (PPA), witnessed firsthand the power of connection at last year’s conference. Cienna, who lives with periodic paralysis herself, attended the conference and served as an advocacy organization exhibitor for PPA. She also attended the NMAC (NeuroMuscular Advocacy Collaborative) meeting, an MDA Advocacy convening of over 30 neuromuscular organizations to advocate for legislative policies as a collective for better access for the community.

“I think as a whole, our community advances when we work together and this conference is a big part of making that happen,” Cienna says. “Whether it was seeing researchers connect to talk about advancing understanding, organizations unite for advocacy, community members meeting someone who understood what their experience was like or different points of view coming together, we all moved forward.”

President of the Periodic Paralysis Association Cienna Ditri (right) with colleagues at the 2026 MDA Clinical & Scientific Conference

From her professional standpoint, Cienna says that the opportunity to connect and meet with other organizations in attendance and make plans to work together to better serve the NMD community was invaluable. “Attending the conference in person, this was one of my favorite parts,” she says. “Besides being at the Periodic Paralysis Association’s table and meeting researchers, we were able to plan lunches with a few of researchers to create plans for future research, presentations, and innovation. Not only did I hear about innovation, but we made plans at the conference to create further advancement. It was a beautiful full circle opportunity.”

As someone living with a neuromuscular disease, Cienna found that attending the conference sessions was undeniably impactful – and surprisingly emotional.

“I don’t think I expected it to be as emotional as it was,” Cienna says. “Going to sessions and hearing about groundbreaking new treatments was wonderful, but learning the true patient impact, lives saved, and quality of life created had me reapplying mascara after sessions. This isn’t theoretical, this is real life. This is making the world a better place.”

Lily echoes both the incredibly tangible and deeply emotional impact of attending conference. “It is incredibly encouraging to see the collaboration taking place and to hear directly from the clinicians and scientists who are working to improve our futures,” she says. “Every time I interact with members of the research and medical community, I leave with a renewed sense of hope—not only for my own future, but for the future of everyone living with a neuromuscular disease.”

Access to the 2027 conference

With registration for the 2027 MDA Clinical & Scientific Conference now open, community members across the country are marking their calendars. Next year’s conference will take place March 21–24, 2027, at Rosen Shingle Creek in Orlando, Florida. Programming will include a variety of large group sessions and thematic break-away sessions, industry sponsored forums and hundreds of peer-reviewed abstracts highlighting advances in next-generation clinical trial design, biomarker development, therapeutic delivery systems, gene and RNA-targeted therapies, and AI-enabled drug discovery that are reshaping how neuromuscular diseases are understood, treated, and managed, underscoring a central reality driving the field forward: time is muscle.

Cienna with MDA’s Quest Media Editor-in-Chief Mindy Henderson

Whether attending the conference in person or virtually, Cienna urges others to take advantage of the opportunity to learn and connect. “If you can go in person, go! This is truly the best place to learn about groundbreaking advancement, better understand the most current advancements about your condition, and meet other people with neuromuscular conditions,” she says. “But if you can’t attend in person, you can gain so much from attending virtually. Our lives are busier than ever – but being informed and becoming your best advocate is also more important than ever. Attending virtually, you can attend a session in the morning and make it to your kid’s soccer game in the afternoon! It’s an amazing asset and a way to access information that you wouldn’t have otherwise.”

Register now

People and families registered with MDA are invited to participate virtually at no cost or attend in person at a reduced registration rate, providing opportunities to engage with emerging science, hear directly from experts, and connect with the broader neuromuscular community. Community members may apply here. Once verified by MDA, people will receive a separate email containing a link to register for the conference.