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Rare Disease Patient Registries: Experiences and Expectation of over 3000 patients in Europe

Thursday 22 May 2014

Eurordis has carried out a survey on rare disease patient registries. Results are available for the following rare skin diseases: Ehlers Danlos Syndrome (p.80), neurofibromatosis (p.84), Tuberous Sceloris (p. 84).
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