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Orphanet
‘Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.’ |
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OrphaNews (Orphanet Newsletter)
‘OrphaNews Europe is the twice-monthly electronic newsletter of the European Union Committee of Experts on Rare Diseases. Register to receive the newsletter by email or view online.’ |
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Projects Magazine
Link to 'Projects Magazine'. The EURO-WABB project is featured on pages 52-53 |
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Rare Disease Day 2012
February 29 2012 is the Fifth International Rare Disease Day. The event is coordinated by EURORDIS. Read more about the events taking place throughout Europe via the Rare Disease Day website |
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Rare Renal Diseases (UK RA and BAPN)
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Registro Malattie Rare – Regione Veneto
Italian national resource providing information about rare disease management. |
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UK Wolfram Syndrome Support Group
‘The site was set up and is monitored by families affected by this rare genetic disorder and our aim is to raise as much awareness of this syndrome as we can.’ |
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WellChild Wolfram Family Coordinator (UK)
In partnership with Birmingham Children’s Hospital, WellChild has appointed a Wolfram Syndrome Family Coordinator, to work with families of children with the Syndrome; to provide information, support and advice. Find out more on the WellChild website |
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Worldwide Society of Wolfram Syndrome Families
‘The site is intended to aid those who are affected by Wolfram Syndrome, information site prepared by those who are similarly affected.’ |
