Genetic Disorders

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Rareshare.org - Connecting Those Affected by Rare Disorders: http://wp.me/pGxfv-7k
SNsBlog (SNs News) Fri, 30 Oct 2009 18:55:04 -0000
Rareshare.org - Connecting Those Affected by Rare Disorders: http://wp.me/pGxfv-7k
@Hamlet curious any discussion #TEDMED on learning from rare disorders that cause accelerated aging to treat normal aging?
PhilipHotchkiss (Philip Hotchkiss) Wed, 28 Oct 2009 19:47:18 -0000
@Hamlet curious any discussion #TEDMED on learning from rare disorders that cause accelerated aging to treat normal aging?
rare hormone disorders make for interesting plot twists ...
tsnowlin (Thomas Scott Nowlin) Wed, 28 Oct 2009 08:32:57 -0000
rare hormone disorders make for interesting plot twists ...
@diluvsrunning I'm a nurse for kids w/ cancer & rare blood disorders. H1N1 is our main concern now, working with CDC due to our patient pop
JoyMikhael (Joyce Mikhael) Wed, 28 Oct 2009 03:33:32 -0000
@diluvsrunning I'm a nurse for kids w/ cancer & rare blood disorders. H1N1 is our main concern now, working with CDC due to our patient pop
Amazing how many fairy tales are based on genetic disorders RT @reallygorgeous: Girl Born w Rare Mermaid Condition Dies http://bit.ly/4u80sr
chrysanthemum85 (Serena Dempsey) Mon, 26 Oct 2009 23:38:02 -0000
Amazing how many fairy tales are based on genetic disorders RT @reallygorgeous: Girl Born w Rare Mermaid Condition Dies http://bit.ly/4u80sr
Angela’s House plans Oheka Castle benefit for groups fighting rare and serious children’s diseases and disorders. http://tinyurl.com/ygmclp3
HuntingtonLocal (Tim Healy) Mon, 26 Oct 2009 14:15:58 -0000
Angela’s House plans Oheka Castle benefit for groups fighting rare and serious children’s diseases and disorders. http://tinyurl.com/ygmclp3

 

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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.
Meta Description: [ National Organization for Rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on the prevention, treatment and cure of rare diseases. ]

Cherubs - A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
Meta Description: [ Support and Research Organization for families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia (CDH) ]

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.
Meta Description: [ Contact a Family is a UK charity for families with disabled children. We offer information on specific conditions and rare disorders. ]

Fibrous Dysplasia Support Online - For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
Meta Description: [ Site is dedicated to providing support for individuals and families seeking answers on Fibrous Dysplasia, a rare bone disease that effects children. ]

Human Growth Foundation - Information about growth-related disorders through education, research, and advocacy. Member driven organization.
Meta Description: [ helping adults and parents of children with disorders of growth and growth hormone through research, education, support, and advocacy ]

Information Centre for Rare Diseases and Orphan Drugs - Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms
Meta Description: [ Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) in Bulgaria - the first Eastern European information and educational service, dedicated to all patients, associations and medical professionals, interested in rare diseases and orphan drugs. The centre is situated in Plovdiv (Bulgaria... ]

Kindler Syndrome - An article and case study of this rare disease. Includes links.

Lymphangiomatosis and Gorham's Vanishing Bone Disease - Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.
Meta Description: [ This page is made by a small family in Denmark, because our son has been diagnosed with the ]

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.

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.

Tetrahydrobiopterin - Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
Meta Description: [ BH4 - Tetrahydrobiopterin Deficiencies ]