Conditions and Diseases

A place to keep friends and family updated about Jim Tench's ongoing battle with Idiopathic Pulmonary Fibrosis (IPF), and his double lung transplant that it has necessitated.

Information on a variety of conditions, including asthma, sleep apnea and tuberculosis, plus a drug information search. Includes information about the respiratory system, and a kid's corner.

Offers facts including how is it diagnosed, living with it, physiotherapy techniques and devices, and forums available to meet other people with this disorder.

Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.

Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms

Information about growth-related disorders through education, research, and advocacy. Member driven organization.

For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.

Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.

Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.

A parent built site for parents with children with PHHI. Find personel stories and links.