Directory Listing(s)

Cherubs A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia. http://www.cherubs-cdh.org

Contact a Family Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK. http://www.cafamily.org.uk

Human Growth Foundation Information about growth-related disorders through education, research, and advocacy. Member driven organization. http://www.hgfound.org/

Lymphangiomatosis and Gorham's Vanishing Bone Disease Provides general information and a personal account, including pictures and X-rays. http://www.gorhams.dk

National Organization for Rare Disorders, Inc. Information about NORD, its programs, special events and the variety of services offered. http://www.rarediseases.org/

Tetrahydrobiopterin Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency. http://www.bh4.org

XLH Network Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets. http://www.xlhnetwork.org/