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bpsu.inopsu.com British Paediatric Surveillance Unit. We present the work of the unit and research data on paediatric rare disease. 1clever.org The Pemphigus & Pemphigoid Society provides the most comprehensive collection of information about pemphigus and pemphigoid, two rare autoimmune blistering diseases. This homepage is an index of this information. As a 501(c)(3) nonprofit foundation, 100% of donations, gifts and grants go to help our patients. www.lam.org.nz LAM Trust of New Zealand aims to fund research into the rare disease Lymphangioleiomyomatosis, and to provide funding to look for it's cause and for a cure. www.njatty.net Focus On by NJAtty.net provides the latest information on a number of rare diseases, health conditions and recent legal findings. Helpful medical links and resources. nwsarcoma.org Cancer support and education for those who are living with a sarcoma and other rare bone tumor diseases. www.pku-info.org The PKU-info.org web site provides news, information and links about phenylketonuria, a rare, inherited metabolic disease. Web site sections include: Information WhatIsPKU StoriesAndSpeeches OtherInformation Ressources Organisations FoodSupplier Websites - Links MailingLists Guestbook News pku-info.org Partner Sites 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! teamhartley.co.uk In late November 2003 the 4 Hartley sons (Joshua - 12 , Nathan - 10, Daniel - 8 and Luke - 4) were diagnosed with a rare genetic conditions known as X-Linked Lymphoproliferative Syndrome (XLP) or Duncan Disease. This is very rare with only around a 100 families world wide being diagnosed (although it is believed that XLP is massively under prescribed). Without treatment it is unlikely that the boys will make it into and through their teen years. The 'cure' treatment is a Bone Marrow Transplant. thyroidcancersongs.com Thyroid cancer survivor, Megan Stendebach, shares humor and songs about living with this rare disease. www.raredis.org Information Center for rare diseases and Orphan Drugs - Bulgaria / Èíôîðìàöèîíåí Öåíòúð çà Ðåäêè Áîëåñòè è Ëåêàðñòâà Ñèðàöè - Áúëãàðèÿ 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.gorhams.dk This page is made by a small family in Denmark, because our son has been diagnosed with the chromosomehelpstation.com The Chromosome Help-Station provides information on people with anomalies on chromosomes as a reference guide for families, patients and their organisations. |