Radio Noro a fost prezent la conferinta Rare Disease International care s-a tinut la Geneva.

Rare Disease International este alianta globala de pacienti cu boli rare si misiunea organizatiei este de a crea o voce unica la nivel mondial pentru oamenii cu boli rare. In partea a doua a emisiunii am realizat un interviu cu doamna Durhane Wong presedinte a Rare Disease International.

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You are invited today at the Planet for Rare Diseases to find out about Greece National Alliance for Rare Diseases (PESPA) and the problems that patients with rare diseases have to face in Greece. PESPA was established in 2003: www.pespa.gr.

Romanian initiatives in the Rare Diseases field. National Reference Networks vs European Reference Networks for Rare Diseases. Today at Rare Diseases’ Planet we have invited for you Prof. Dr. Maria Puiu, Dr. Adela Chirita Emandi and Nicol Alexandrescu from Genomic Center Timisoara.

We are honored to invite you to listen at Radio NoRo today the Message that the Holy Father Francis sent to patients with rare diseases and the member states representatives, as well as the final ‘Recommendations’ that emerged at the end of the deliberations of the international conference: ‘Inequalities in Health Care at the Level of the Access to Care of Populations, organized at Vatican on 11-12 November 2016. 

A milestone for 30 million patients in Europe 15 December 2016, Brussels, Belgium - The European Commission today announces the first 23 European Reference Networks for rare diseases (ERNs).

Geske Wehr was elected to the Board of Directors of EURORDIS in 2012.