A Foundation for Building Strength for Nemaline Myopathy will engage stakeholders—including patients, caregivers, researchers, physicians, health payers, other advocacy organizations, policy makers and biotechnology innovation centers—through targeted meetings, webinars, and an annual conference and knowledge exchange. The collaboration with stakeholder groups is expected to develop a clear path to treatment for the rare disease, foster better patient-physician communication, improve patient care, and further encourage patient-centered research.
The projected outputs from this project are six teleconferences, five webinars, five in-person meetings and an annual conference.
Project collaborators include The Hospital for Sick Children; NINDS/NIH; Boston Children's Hospital; MIT NEW DIGS; NORD; University of Florida Muscle Lab; multi-stakeholder volunteers; multi-stakeholder meeting panelists; and conference consultants.
Project Resource: Meeting Outcomes and Engagement Summary
Project Resource: AFBS Webinar Presentation to the MDA
Nemaline Myopathy Conference and Family Social
July 8-11, 2016
Crown Plaza Hotel
66 Hale Avenue
White Plains, NY 10601
This is an in-person meeting and it is open to the public for a fee. See the conference website for details.