Patient Community

  • Yahoo Dysferlin Group:

    The Yahoo dysferlin discussion group is a community of people diagnosed with a dysferlinopathy (LGMD2B/Miyoshi), as well as family members and supporters, who share their experiences and knowledge and ask and answer questions on a secure discussion board. The group was founded in 2001 by Brad Williams, a dysferlinopathy patient and a member of the Jain Foundation scientific team. In the ten years since its founding, the group has grown to over 150 members and includes over 750 archived messages on a variety of topics related to diagnosis, genetics, medical issues, work and home adaptations, research, and other areas.

  • Jain Foundation Facebook page