The European Conference on Rare Diseases

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• 9 April 2019 – Ichthyosis Awareness Month 2019 : more than ever needed
• 13 March 2019 – IN MY SKIN Exhibition – The Museum of Man and Nature – Paris – France
• 6 March 2019 – When patients or relatives speak about rare riseases
• 26 February 2019 – February : a crucial month for Ectodermal Dysplasia
• 6 February 2019 – Rare Disease Day : Europe united against rare diseases
• 24 November 2018 – European Reference Networks’ first steps : praises and uncertainty
• 31 October 2018 – Girls of the moon : a successful documentary movie about Xeroderma Pigmentosum
• 17 October 2018 – The inspiring words of Epidermolysis Bullosa sufferer Ianina Ilitcheva
• 16 October 2018 – ’Life with Epidermolysis Bullosa’: a reference book for all those concerned by the disease
• 9 October 2018 – 2018 ERN-SKIN Training : improved and still open for registration

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