www.cafamily.org.uk Contact a Family is a UK charity for families with disabled children. We offer information on specific conditions and rare disorders. chromosomehelpstation.com The Chromosome Help-Station provides information on people with anomalies on chromosomes as a reference guide for families, patients and their organisations. www.rarechromo.org Unique - Rare Chromosome Disorder Support Group for families affected by any rare chromosome disorder : deletions, duplications, translocations, trisomy, monosomy, rings, mosaic, inversion, isodicentric, microdeletions, tetrasomy, monosomy, congenital, inherited rarediseases.org 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. www.raredisorders.com RareDisorders.com is a World Wide Web community dedicated to providing support for people affected by rare disorders. Join one of more than a 1000 rare disease support groups today! www.spiralnotebook.org Newsletter for health care professionals and patients interested in CPT deficiency, a rare genetic disorder of fat metabolism that causes muscle breakdown. stiffman.org A rare progressive neurological disorder characterized by severe spasm, rigidity, and falls. I was diagnosed in 1994. www.polychondritis.com Relapsing Polychondritis (RP) is an rare, chronic, multi-system disorder characterized by recurrent episodes of inflammation of cartilaginous tissues. www.empower.org.nz APECED syndrome is a very rare genetic syndrome involving the autoimmune system. It is a combination of several distinct disorders. www.cdlsusa.org The Cornelia de Lange Syndrome (CdLS) Foundation is a nonprofit [501 (c) (3)] voluntary health organization based in Avon, Connecticut (USA). The Foundation provides a host of services that attract, educate, and unite families touched by this rare birth disorder which causes individuals to develop at a slower rate, both physically and mentally. Each day, we enlist the support of hundreds of dedicated volunteers throughout the United States and the expertise of professionals from the fields of genetics, medicine, education, and psychology in our collective effort toward advancing global recognition and societal understanding of the syndrome. Once you become familiar with a few features common to the syndrome, you will likely recognize the faces of people with CdLS forever. And once you come to know the faces of people with Cornelia de Lange Syndrome, we ask... 'How could you ever forget?' The Cornelia de Lange Syndrome Foundation is a family support organization which exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime. www.niacmd.net rare diseases, metabolic diseases, metabolic, diseases, information, advocacy, rare disorders, genetic diseases, genetics, carers, children, young adults, activity, flexible services, responsive services, supportive, support, research, befrienders, conferences, forums, fod, mcadd, vacancies, treks www.ndif.org A foundation formed to support education, research, treatment, and cure for Nephrogenic Diabetes Insipidus. www.kleinelevin.com The Kleine-Levin Syndrome Foundation, Inc. has been created to provide information and educational resources for those persons with Kleine-Levin Syndrome (KLS), to provide support to the family and friends of those persons with Kleine-Levin Syndrome and to provide resources to the medical community to explore causes and cures of this syndrome. |