About The Platform

The Family Support Groups platform is designed for individuals involved in rare diseases, including patients and their caregivers and family members, advocates, healthcare professionals, and researchers, who can join disease-specific groups. Patients and families have the opportunity to freely communicate to share personal experiences, exchange knowledge, and offer valuable advice through a chat box. Disease-specific information and announcements about available diagnostic and treatment options and the latest advancements in research and ongoing clinical trials can also be contributed through a feed box.

This platform is a centralized hub, providing accessible resources and fostering collaboration among individuals affected by rare diseases and the wider community involved in their care and research. It enables them to stay informed about their conditions, including available diagnostic and treatment options and the latest advancements in research and ongoing clinical trials.