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Reviewed Resources:
21.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.
URL:http://rarediseases.info.nih.gov/ord/
22.Barth Syndrome Family Network
Offers details about the disease, message board, research sites, events and private chats. Numerous links to other resources.
URL:http://shelbowen.freeyellow.com/
23.Alstr˜m Families at SmartGroups
Mailing list and usegroup for people interested in Alstr˜m Syndrome. Provides links, newsletters, message archive and contact to professionals involved with this rare disorder.
URL:http://smartgroups.com/groups/alstromfamilies
24.Drkoop.com: Medical Encyclopedia
Looks at the causes, risk factors, symptoms, testing, treatment, prognosis and complications of pemphigus vulgaris.
URL:http://umm.drkoop.com/conditions/ency/article/000882.htm
25.Drkoop.com: Medical Encyclopedia
Pierre Robin syndrome, a description, risks, symptoms, tests, treatment, prognosis and possible complications.
URL:http://umm.drkoop.com/conditions/ency/article/001607.htm
26.Wegener's Granulomatosis Australian Newsletter
Overview, FAQ, patient histories and medical information.
URL:http://users.netcon.net.au/ttp/content1.htm
27.VACTERLS Association Family Network
Organization connecting VACTERLS/VATER families to create a network of those who have survived and can help others make it through.
URL:http://vafn.co-ltd.com
28.The Fragile WEB Site
Information on Jacobsen syndrome, the chromosome deletion syndrome, for the families and carers of JS patients. Reference databaase, family support groups and clinical information.
URL:http://web.ukonline.co.uk/c.jones/contents.htm
29.Aicardi Syndrome Foundation
Information about the disease, a medical survey, where to get help, publications and a chat room for support.
URL:http://www.aicardi.com/
30.Alstrom Syndrome UK Support Group
Information centre and discussion forum for anyone with an interest in this disorder.
URL:http://www.alstrom.org.uk/
31.Wegener's Granulomatosis Site
Personal site by a patient in Sweden containing general information about the illness and resources for patients.
URL:http://www.angelfire.com/ga/wegeners/
32.Barth Syndrome Foundation
Promotes knowledge about this disease among families, physicians and scientists, serving as a focal point for data and research for scientists. The group offers support to families learning to cope with the disorder.
URL:http://www.barthsyndrome.org
33.Tetrahydrobiopterin Home Page
Information on structure, biosynthesis and pathophysiology of BH4 - database of BH4 deficiencies - database of mutations - screening for BH4 deficiency. These are just a few of the topics discussed.
URL:http://www.bh4.org
34.Wegener's Granulomatosis UK
Support resources in the United Kingdom as well as information and resources in French and Spanish.
URL:http://www.btinternet.com/~wegeners.uk/
35.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.
URL:http://www.cafamily.org.uk
36.The CaF Directory
A description of aicardi syndrome, the inheritance pattern and prenatal diagnoses.
URL:http://www.cafamily.org.uk/Direct/a28.html
37.The CaF Directory
A look at what Pierre Robin Syndrome is, the causes, treatments and a support group based in the United Kingdom.
URL:http://www.cafamily.org.uk/Direct/p24.html
38.The CaF Directory
A desrciption of rubinstein taybi syndrome, its inheritance pattern, psychological and behavoural characteristics and a support group for those living in the United Kingdom.
URL:http://www.cafamily.org.uk/Direct/r36.html
39.Pemphigus Vulgaris
An informative article by TJ Moriarty about this disorder.
URL:http://www.chronicillnet.org/online/lehne.html
40.Cystinosis Research Network
Information about the organization and their mission. Extensive database about the disease as well as support groups, research and links to other resources.
URL:http://www.cystinosis.org
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