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...

Mesothelioma and Our Hopes for Its Future

While 80% of rare diseases are genetic in origin, the remaining 20% are related to the environment or infection. This week’s blog, written by Tonya Nelson and her colleagues at Mesothelioma and Asbestos Awareness Center, introduces us to one such rare disease...