Patient Support Group – In the beginning

In this week’s blog, David Bennett – a member of our Empowerment Advisory Committee – explores the early stages involved in setting up a patient group for a rare disease. His blog includes interviews with parents who have set up groups for rare...

A patient centric road trip

[row][two-third] Rare disease patient groups play a huge role in building a community of people affected by a disease, and helping to share information about research, fundraising, services, clinical care, and symptom management. One of the best ways to help these...