Rare Diseases Symposium

Cross-border research: opportunities and experiences

European cooperation is of great importance in tackling rare diseases. Conducting joint research offers opportunities for care improvement for patients with a rare disease. Are you curious about the opportunities for European research into rare diseases? Then come and visit the Rare Diseases Symposium on Wednesday November 6th at the LUMC main building in lecture hall 5. Endo-ERN Coordinator Alberto Pereira will be one of the speakers, together with Faisal Ahmed and ePAG representative Johan de Graaf.

Registration is not required, joining the symposium is free of charge.

Program

14.00 Opening [...]

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Endo-ERN webinar: Alström Syndrome

On Monday 25 November 2019 at 15:00 – 16:00 CET an Endo-ERN webinar about “Alström Syndrome” is organised. The webinar will be held by Pietro Maffei MD,PhD, Padua University Hospital, Italy and Marina Valenti, mother of a patient and member of Associazione Italiana Sindrome di Älstrom . Pietro will be talking about: Endocrine and Metabolic issues in Alström Syndrome. Furthermore, Marina will be sharing the family view: Coping with Social, Educational and Medical obstacles AS presents.

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