APPOINTED: Johan de Graaf appointed to EURORDIS Board

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Great news! Endo-ERN ePAG Johan de Graaf has been elected to EURORDIS Board of Directors during the organisation’s annual General Assembly 2024. Wishing you success Johan!


The full report on the EURORDIS website stated the following:

The elections saw the appointment of six members to the Board, including four re-elected and two newly elected members.

Avril Daly, Chief Executive Officer of Retina International, was re-elected to the Board. Following a meeting of the EURORDIS Board of Officers (taking place after elections) to the Board of Directors, Avril has been confirmed to continue as President of the organisation.

The two newly elected Board members are Johan de Graaf of the Dutch Pituitary Foundation (Nederlandse Hypofyse Stichting) and Tetiana Kulesha of Rare Diseases of Ukraine.

Diagnosed with a pituitary condition in 2007, Johan de Graaf progressed from seeking information to becoming a volunteer and eventually the chairman of Nederlandse Hypofyse Stichting. He has been a key advocate for better care for pituitary patients, focusing on medical research and international relations. His training in patient advocacy enhances his role in patient advocacy and his contributions to European Reference Networks and the European Medicines Agency.

Tetiana Kulesha, Chair of the Board of Rare Diseases of Ukraine, has played a crucial role in ensuring access to medicines and healthcare for rare disease patients amid the war in Ukraine. Her organisation’s collaboration with international partners, including EURORDIS, has provided significant humanitarian aid. Tetiana’s advocacy focuses on improving healthcare policies and participating in European initiatives to enhance care quality for rare disease patients.

Alexandre Mejat of AFM-Téléthon, Anna Arellanesová of Rare Diseases Czech Republic (ČAVO), and Simona Bellagambi of Rare Diseases Italy (UNIAMO) were also re-elected to the Board.

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