Genetic Disorders

National Institutes of Health (NIH) News Releases

Scientists Define 21 New Genes Associated with Crohn's Disease
Mon, 21 Jul 2008 16:00:00 -0400
A consortium of researchers from the United States, Canada, and Europe has identified 21 new genes for Crohn’s disease, a chronic disease of the large and small intestines. This discovery, funded in part by the National Institutes of Health (NIH), brings the total number of known genes associated with Crohn's disease to more than 30 and advances understanding of causes and potential avenues to develop new treatments.
NIAID Will Not Move Forward With The Pave 100 HIV Vaccine Trial
Thu, 17 Jul 2008 15:16:00 -0400
After soliciting and considering broad input from the scientific and HIV advocacy communities, the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH), has determined that it will not conduct the HIV vaccine study known as PAVE 100. However, NIAID believes the vaccine developed by its Vaccine Research Center (VRC) is scientifically intriguing and sufficiently different from previously tested HIV vaccines to consider testing it in a smaller, more focused clinical study.
NHGRI Funds Next Step in Understanding Biological Roots of Common Diseases
Thu, 17 Jul 2008 08:38:00 -0400
The National Human Genome Research Institute, one of the National Institutes of Health, today announced grants expected to total about $31 million over the next four years for research aimed at gaining a better understanding of how specific genetic variants act to influence the risk of diabetes, heart disease, cancer and other common diseases.

CNN.com - Health

Make your home healthier in five easy steps
Wed, 23 Jul 2008 09:14:19 -0400
You may think your home is safe, but there may be toxins in your water, linens, and even your deck. There are several simple steps you can take to make your kitchen, living spaces, playroom, and backyard healthier for you and your family. Parenting has specific steps to follow.
Cancer expert warns employees on cell phones
Wed, 23 Jul 2008 19:29:15 -0400
Read full story for latest details.

 

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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 ]