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DS Network, Inc.
DS Network is a 501(c)3 parent run organization here in Arizona. Our Purpose is to provide information to assist people with Down Syndrome to better understand and arrange for services, and to provide networking opportunities for people with DS and their families.
http://dsnetworkaz.org
RING14 NO PROFIT SUPPORT GROUP FOR RESEARCH ON RARE NEUROGENETIC DISEASES
AIMS AND PURPOSES OF OUR ASSOCIATION 1) IDENTIFYING AND CONNECTING ALL FAMILIES WITH CHILDREN AFFECTED BY THE RING 14 SYNDROME IN ORDER TO OFFER THEM THE SUPPORT OF OUR ASSOCIATION. 2) ESTABLISHING THE FIRST MEDICAL AND SCIENTIFIC ‘DATA BANK’ ON THIS SYNDROME 3) DESIGNING A PROTOCOL OF MEDICAL SURVEY FOR RING 14 SYNDROME PATIENTSAND INVESTIGATING THE CORRELATION BETWEEN CLINICAL MANIFESTATIONS ANDMOLECULAR GENETIC CHANGES. 4) PROMOTING ALL SOCIAL, POLITICAL AND SCIENTIFIC ACTIVITIES FOR DIAGNOSIS AND RESEARCH OF THE MOST EFFECTIVE THERAPIES TO COMBAT RING 14 SYNDROME. 5) RAISING FUNDS TO PROMOTE BASIC AND CLINICAL RESEARCH ON RING14 SYNDROME, ALSO BY FUNDING SCHOLARSHIPS FOR A PROPER TREATMENT OF RING14 SYNDROMEAND RELATED NEUROGENETIC DISORDERS. 6) CREATING A NETWORK OF CONSULTANTS INCLUDING DOCTORS, SCIENTISTS, HEALTH WORKERS INVOLVED IN THE PROBLEMS RELATED TO RING 14 SYNDROME.
http://ring14.com
Ethical Issues in Pharmacogenetics
Dr. Carol Isaacson Barash examines how pharmacogenetics promises drugs specific to an individual's condition and some of its ethical concerns.
http://www.actionbioscience.org/genomic/barash.html
The Genetics of Autism
Dr. Michael J. Dougherty examines why research into cures for autism is difficult and the role of genetic and environmental factors on those with the disorder.
http://www.actionbioscience.org/genomic/dougherty.html
The National Organization for Albinism and Hypopigmentation
NOAH is a national non-profit organization of people with albinism, their families, and professionals who work with them.
http://www.albinism.org
Alport Syndrome
Information about this hereditary renal disease. German site with English translation.
http://www.alport.de
The Children's Brittle Bone Foundation
The Children's Brittle Bone Foundation is a 100% volunteer organization that raises money to fund research for Osteogenesis Imperfecta.
http://www.cbbf.org
Ectodermal Dysplasia Society
A support group for those with Ectodermal Dysplasia (including Incontinentia Pigmenti) based in the UK.
http://www.ectodermaldysplasia.org.
"He Has White Hair"
Albinism from the perspective of Craig Farraway, someone who has it, and has lived his life so far, dealing with the ups and downs of having this rare disorder. This site has Craig's personal story, photos, links, frequently asked questions, and links to his music.
http://www.geocities.com/cfontheweb
NDI Foundation
The Nephrogenic Diabetes Insipidus Foundation is dedicated to informing and helping the NDI community.
http://www.ndif.org
Rett Syndrome Association UK (RSAUK)
Rett syndrome is a complex neurological disorder. It affects mainly girls, resulting in profound and multiple disability. Our national charity provides information and advice for families and professionals. Our services include a quarterly magazine, Family days, a Family Weekend, self-help support groups across the UK, and local work with professionals to establish knowledge and good practice in care and management. Our Family Support Workers provide proactive support and information to families and carers. We fund research and work in partnership internationally. We rely on donations and grants for our income. Contact Administration Manager Address 113 Friern Barnet Road, London, N11 3EU Tel 0870 770 3266 (local callers: 020 8361 5161) Hours 9am – 5pm : 24 hr answerphone Fax 0870 770 3265 (local callers: 020 8368 6123) Email info@rettsyndrome.org.uk Website www.rettsyndrome.org.uk
http://www.rettsyndrome.org.uk
Shwachman-Diamond Syndrome Foundation
Shwachman Diamond Syndrome Foundation is an established non profit supporting families dealing with SDS. We also raise money to fund research for a future cure. We disseminate medical information to families and physicians.
http://www.shwachman-diamond.org
Wholistic Lymphedema Treatment Center
Treating Lymphedema and Lipoedema with Manual Lymph Drainage and natural remedies. Pioneered the use of Horse Chestnut, documented in case studies. Approved provider with Medicare, Blue Cross and other insurance companies.
http://www.uhealth.net
Ups and Downs Society
The Calgary Ups and Downs Society supports families with a child or children with Down syndrome.
http://www.upsdowns.org
Primary Ciliary Dyskinesia
Information on a rare congenital disease.
http://www.p-c-d.org/en/
seeAbility - Juvenile Battens Disease
An in depth article on this disorder, includes the stages of the disease and the symptoms.
http://www.seeability.org/randd/jboverview.htm
University of Texas Southwestern Medical Center at Dallas
An article about a patient with McArdle's disease.
http://www.utsouthwestern.edu/home_pages/publish/magazine/we...
National Urea Cycle Disorders Foundation
Information about the organization as well as the disease. Family support, membership, newborn screening project and medical information.
http://www.nucdf.org/
Alkaptonuria and Ochronosis
A detailed look at these disorders, how it affects the many body parts, diagnosis, diet and treatment are discussed.
http://healthlink.mcw.edu/article/921733488.html
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