Earlier this week, PPMD joined global regulatory professionals, patient advocates, industry leaders, and others from across the healthcare community at RAPS Convergence 2026 in Charlotte, North Carolina. This year marked the 50th anniversary of the Regulatory Affairs Professionals Society (RAPS), and served as an opportunity for PPMD to celebrate the importance of patient-centered advocacy and share the perspective of the Duchenne and Becker community in conversations shaping the future of therapeutic development and regulation.
Recognizing Patient-Centered Advocacy
The conference was especially meaningful for PPMD as we were honored with the 2026 Patient-Centered Health Award, recognizing our commitment to ensuring the voices of people living with Duchenne and Becker muscular dystrophy and their families inform therapeutic development and regulatory decision-making, as well as help shape innovations in regulatory policy.
For more than 30 years, PPMD has led efforts to advance meaningful patient engagement and patient-focused therapeutic development through initiatives such as the community-led Duchenne guidance, leading patient preference studies, and administration of the world’s largest Duchenne patient reported outcomes registry. The award is both a recognition of the work we’ve accomplished together as a community and an opportunity to continue working to ensure that patient experiences, priorities, and unmet needs remain at the center of the regulatory process.
Amplifying the Patient Voice
As part of the conference’s plenary program, PPMD’s CEO Katherine Beaverson joined Joanna Johnson and Alison Joseph, patient advocates and Duchenne parents, for a special panel, “The Patient Perspective: Why Our Work Matters,” focused on the real-world impact of regulatory decisions on patients and families. With about 400 people in the room, it was a record attendance for the RAPS Convergence conference’s patient-centered plenary session.
The panel offered an opportunity to bring the Duchenne and Becker community’s perspective directly to the regulatory professionals gathered at the conference, touching on the salient issues critical to patient advocacy and driving home the message that patients and regulatory affairs professionals want the same end for patients, and that the community should work in consort accordingly.
Shaping Rare Disease Regulatory Frameworks
PPMD also joined regulatory leaders from the U.S. Food and Drug Administration (FDA), European Medicines Agency (EMA), National Academies of Sciences, Engineering, and Medicine, and industry for “Navigating the New US and EU Rare Disease Regulatory Framework and Global Harmonization Efforts,” a panel exploring opportunities, challenges, and the future of rare disease drug development. The discussion touched on how regulatory frameworks can foster innovation and better reflect real-world experiences of individuals living with rare diseases. Katherine provided the patient advocate perspective, emphasizing the importance of meaningful patient engagement and collaboration throughout the development process.
We are grateful to RAPS for recognizing PPMD’s work and for creating space for the patient perspective at RAPS Convergence. We look forward to continuing these conversations and working alongside our partners across the regulatory community to advance meaningful progress for Duchenne and Becker.
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