Acid Maltase Deficiency - A brief summary of AMD along with links and news.
Alliance of Genetic Support Groups - national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions.
Alpha1 Antitrypsine Deficiency - One man's perspective and journey with A1AD and a list of links and other resources from the internet.
Ashly's Skeletal Dysplasia - A mom describes her daughters disorder which is thought to be a metabolic disease similar to mucopolysachharisdoses. Also links to other related sites.
Australian MPS & Related Diseases Society - Informs and support those affected, directly or indirectly by an mucopolysaccharide or related disease. Offers information regarding each disease, a discussion forum, a picture gallery and news of events.
Blue Cone Monochromacy - A discussion board for those affected by BCM. Read the contents, search and post from this location.
Chromosome 18 Issues - A support and awareness discussion board for people affected by this disorder.
Chromosome 22 Central - Support group for families who have children with any chromosome 22 disorder, including trisomies, cat eye syndrome, translocations, deletions 22q11, 22q13, VCFS, Digeorge syndrome, rings and unique malformations.
Chromosome Deletion Outreach, Inc. (CDO) - Non-profit voluntary support group for families affected by rare chromosome disorders.
Chromosome Deletion Outreach. - Provides support and information to families. Includes family stories, a library, FAQs and resources.
Daniels Neurofibromatosis page - A child living with neurofibromatosis and optic glioma with links.
Dr. Greene's HouseCalls - A discussion of medical information on trisomy, trisomy 13, genetics, and his own personal family experience with this rare disease.
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.
Genetic Information and Patient Services, Inc (GAPS) - Links to online definitions, information sites, and support groups for genetic disorders and birth defects.
Genetic Interest Group - Information about this UK umbrella group of organizations working together to improve services for people with genetic disorders. A notice board, education, services and links are provided.
Hereditary Disease Foundation - Information about this non profit organization, news, newsletters, recommended reading and contact details.
Hereditary Hemorrhagic Telangiectasia Foundation International, Inc. - Provides patients, families, and doctors with educational information and fosters an exchange of information about the diagnosis and treatment of HHT between patients, physicians, researchers, genetic counselors, agencies, educators, and the general public.
Justin's Journey - A personal story of a young man who was born Hurlers Syndrome. First in the world for Enzyme Replacement Therapy.
Lysosomal Diseases New Zealand - Information, support and advocacy for families affected by Lysosomal Storage Diseases, a group of rare genetic diseases.
Maddy's Page - The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.
Online Genetic Syndrome Support Groups - Sites are listed alphabetically by disease/condition.
Peter's Anomaly Support Group - An online support group for people dealing with Peter's Anomaly.
Primary Ciliary Dyskinesia - Information on a rare congenital disease.
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.
S.O.F.T. - A support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
Spinal Muscular Atrophy E-mail Group - For people with or people who care for people with SMA.
Strickler Family Homepage - A family page offering information about children born with Baller-Gerold syndrome and Omenn syndrome, a form of combined immune deficiency.
Taryn's World: About Switches - Personal page for kids and parents about genetic disorders, especially mannosidosis.
The Gateway Kiosk: Open Topic Forum - A Message Board for communicating questions, concerns and dialogue on children's genetic diseases. Includes a parent-match topic.
Treacher Collins Syndrome - A Personal View - UK based website, containing information about the disorder, with helpful links and discussion forum.
Unique Rare Chromosome Disorder Support Group - Support and information for families of children with rare disorders.
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.
Your Genes, Your Health - The DNA Learning Center's multimedia guide to genetic disorders. Complete in depth articles about each disease listed.
Zara Fox - Read and learn about a little girl that has Coffin-Sirris Syndrome.