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
National Organization for Rare Disorders, Inc.:
Information about NORD, its programs, special events and the variety
of services offered. Includes a rare disease, organization and
orphan drug database. Diseases are listed alphabetically for easy
searching.
http://www.rarediseases.org/
Office of Rare Diseases:
Information on more than 6000 rare diseases, including current
research, publications from scientific and medical journals,
completed research, ongoing studies, and patient support groups.
http://rarediseases.info.nih.gov/ord/
International Rare Disease Support Network:
A community providing more than a 1000 different links to support
groups for the people of all nations.
http://www.raredisorders.com
Human Growth Foundation:
Information about growth-related disorders through education,
research, and advocacy. Member driven organization.
http://www.hgfound.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
Nomid /Cinca:
Resource for parents and patients suffering from Neonatal Onset
Multi-inflammatory Disease Chronic, or Infantile, Neurologic,
Cutaneous and Articular syndrome. Site maintained by patients,
parents and friends for their counterparts worldwide. Email support
group at eGroups.
http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm
Tetrahydrobiopterin:
Information on structure, biosynthesis and pathophysiology of BH4
and tetrahydrobiopterin deficiency.
http://www.bh4.org
Fibrous Dysplasia Support Online:
For those seeking support and information concerning the rare bone
diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
http://members.cox.net/fdsupport/index.html
Kindler Syndrome:
An article and case study of this rare disease. Includes links.
http://digilander.libero.it/camdic/KINDLER.html
Lymphangiomatosis and Gorham's Vanishing Bone Disease:
Provides general informtion and a personal account, including
pictures and X-rays. Also offers patient contact and an email
discussion group.
http://www.gorhams.dk
