- Dr. Greene's HouseCalls - A discussion of medical information on trisomy, trisomy 13, genetics, and his own personal family experience with this rare disease.
www.drgreene.com/html/21614.html
- Genetic and Rare Conditions Site - Lay advocacy groups, support groups, information on genetic conditions and birth defects for professionals, educators and individuals. Disorders from A-Z.
www.kumc.edu/gec/support
- Genetic Disorders: The Links to Diet - Explores the role of diet in birth defects and genetic disorders. Includes nutritional links to disorders such as Down syndrome, cerebral palsy and homocystinuria and cystic fibrosis.
www.mindspring.com/~sandysimmons/genetic_disorders.html
- Primary Ciliary Dyskinesia - Information on a rare congenital disease.
www.p-c-d.org/en
- Respiratory Syndromes Associated with Congenital Abnormalities of Mucociliary Clearance - A resource providing information for physicians and patients on laboratory analyses of Primary Ciliary Dyskinesia, Immotile Cilia Syndrome, and Kartagener's Syndrome.
pediatrics.med.unc.edu/id/pcd
- The UDGD Spot - Resources and information for families of children with genetic disabilities or syndromes that are still awaiting a diagnosis.
www.camp-a-roo.com/UDGD
- Washington University in St Louis - Family resource for individuals with Papillon Lefevre, Haim-Munk Syndrome and Prepubertal Periodontis. Interested families may participate in a registry dedicated to learning about the natural history of these three conditions.
hematology.wustl.edu/registry
- XLH Network - Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets.
www.xlhnetwork.org
- Your Genes, Your Health - The DNA Learning Center's multimedia guide to genetic disorders. Complete in depth articles about each disease listed.
vector.cshl.org/ygyh
- Gene Clinics - Medical genetics knowledge base. NIH funded, expert-authored descriptions of inherited disorders. Covers genetic testing in diagnosis and management and genetic counseling of patients.
www.geneclinics.org
- Rare Genetic Diseases In Children - A layman's guide to genetic diseases, and a comprehensive resource for families on lysosomal storage diseases.
mcrcr2.med.nyu.edu/murphp01/homenew.htm
|
