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 > 10 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

    The Jain Foundation Facebook page is a place to get up to date information about the Foundation, clinical studies, recent news, and post comments and questions.  This page is frequently updated by Foundation staff.  Please check this page often and/or “like” the page so that you can stay informed.

  • Register with the Jain Foundation