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Our links
Orphan Europe is collaborating with many patient and industry organisations, as well as European and local health authorities. Please find below a list of useful links :
Rare Disease Platforms |
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Orphanet |
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ORPHANET is a database dedicated to information on rare diseases and orphan drugs.
http://www.orpha.net
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GIS Maladies Rares (France) |
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Le GIS-Institut des maladies rares a été créé en avril 2002 à l’initiative des pouvoirs publics, des associations de malades et des organismes de recherche pour stimuler, développer et coordonner la recherche sur les maladies rares.
http://www.institutmaladiesrares.net
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OMIM Database |
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Online Mendelian Inheritance in Man. A catalog of human genes and genetic disorders developed by NCBI, the National Center for Biotechnology Information.
http://www.ncbi.nlm.nih.gov/omim
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Eurordis |
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The European Organisation for Rare Diseases is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
http://www.eurordis.org/sommaire.html
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Contact-a-family (UK) |
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Contact a Family is a charity providing advice, information and support to the parents of disabled children (UK).
http://www.cafamily.org.uk
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Federazione Italiana Malattie Rare - Uniamo (Italy) |
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Italian Rare Disease Patient Asociation.
http://www.uniamo.org
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Porphyria |
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European Porphyria Initiative |
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The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria, focusing in particular on the prevention and treatment of acute attacks, to provide information and support to families affected by porphyria, and to support and encourage medical research.
http://www.porphyria-europe.org
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Drug database for Acute Porphyria. |
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The information in this drug database for acute porphyria is meant to be used by health care professionals, even though it may also be of interest to patients. Drug use in acute porphyria should always be discussed jointly by patient and health care professional, and if in doubt, further advice should be obtained.
http://www.drugs-porphyria.org
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Wilson’s disease |
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Eurowilson |
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Eurowilson is founded by the European Sixth Framework program. The primary aim is to determine the epidemiology of Wilson's disease and to plan randomized controlled trials.
http://www.eurowilson.org
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Cystinosis |
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Cystinosis research network |
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The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.
http://www.cystinosis.org
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Cystinosis Research Foundation |
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Raises funds to support clinical research and is dedicated to educating the medical and public communities about Cystinosis.
http://www.natalieswish.org
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Patent ductus arteriosus |
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PDA.se |
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A web site that collects and presents information about the patent ductus arteriosus (PDA).
http://www.pda.se
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Cystic Fibrosis |
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European Cystic Fibrosis Society |
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The ECFS aims to achieve the best possible treatment and the highest quality of life for the patient with cystic fibrosis by the development and distribution of knowledge in the field of cystic fibrosis.
http://www.ecfs.eu
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Cystic Fibrosis Europe |
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Cystic Fibrosis Europe is the federation of national European CF Associations and a subdivision of Cystic Fibrosis Worldwide.
http://www.cfww.org/cfe/
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Congenital disorders of glycosylation |
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Euroglycanet |
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A European network for the advancement of research, diagnosis and treatment of congenital disorders of Glycosylation.
http://www.euroglycanet.org
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Immunodeficiency |
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Urea cycle disorders |
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Industry organisations |
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EBE |
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European Biopharmaceutical Enterprises is the European trade association that represents biopharmaceutical companies of all sizes operating in Europe.
http://www.ebe-biopharma.org
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Authorities |
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