Rare Diseases

The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research.
The website offers support for patients and their families. It also provides a forum for rare disease community to share cross-disease information and social support.

This book may be of interest to anyone coping with chronic illness in their twenties or thirties. It addresses needs of people with rare disorders and with complex chronic conditions.  It can be used as a guide to managing chronic illness, dealing with diagnoses, treatments and hospitalizations and to living a satisfying and productive life despite the illness.

CORD in the Canada's national network for representing people living with rare diseases. Although the website is dedicated mostly to professionals working with rare disorders it also provides information that may be of interest to patients and their families. It lists links to organizations, publications and presentations on various aspects of rare disorders.