EURORDIS Elects New Board of DirectorsJune 2023
The EURORDIS Board of Directors is a body of 14 elected officials charged with providing strategic recommendations and direction to our organisation. Their guidance is implemented under the supervision of the Board of Officers, led by EURORDIS President, Avril Daly. They represent a diverse range of social and professional backgrounds, cultures, geographic locations, and disease areas, in order to best provide the best guidance for the collective interest of EURORDIS and its members.
Every year, EURORDIS holds its General Assembly, where our full members elect the Board of Directors and approve our Activity and Financial reports of the previous year, as well as our Work Programme and Budget for the coming year. The newly elected Board of Directors subsequently elects the Board of Officers.
Following voting on 22 May 2023, we are happy to announce the reelection of our Vice President, Dorica Dan, and our Treasurer, Alain Cornet, with Anna Arellanesova becoming Deputy General Secretary and Simona Bellagambi our second Vice President.
As we begin this new term, we would like to take a moment to welcome our four newest Directors, and explore the backgrounds and expertise they bring to EURORDIS.
Daniel de Vicente
Daniel de Vicente has been a vocal member of the FEDER Board of Directors since 2020 and President of the Association of Patients with ASMD (Niemann-Pick B, A, A/B Acid Sphingomyelinase Deficiency) since its creation in 2019.
At the international level, Daniel is a European expert on the EMA (European Medicines Agency) and Research Liaison Officer of the Niemann-Pick International Alliance, as well as a member of the Niemann-Pick International Patient Registry working group (INPDR).
Currently, he works as a freelance health consultant in management and strategic planning for pharmacies, health establishments and non-profit entities.
I am convinced that my personal and professional knowledge will bring to EURORDIS’ Board of Directors the added value of relying on a person with experience of the obstacles faced by a person living with a rare disease.Daniel de Vicente
Tomasz is an economist by training, and a Quality Assurance & Food Safety Manager by profession. He has more than 15 years of professional experience in project coordination and advisory activities related to the implementation of the European Structural and Investment Funds in Poland.
He is also the CEO of a patient organisation called the Foundation of Borys the Hero focused on providing strategic advice to public entities. His involvement covers various local and regional activities related to the strategic planning of plans and programmes dedicated to people with disabilities and living with rare diseases.
As a patient Advocate, Tomasz is involved as an e-PAG Member of ERN-ITHACA (the European Reference Network for Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders), and a Patient Board Member of MetabERN (the European Reference Network for Hereditary Metabolic Disorders). Furthermore, he is also involved in EURORDIS Therapeutic Action Group (TAG), supporting its activities on medicines for children. He was nominated for the TAG by the European Commission to the Paediatric Committee of the European Medicines Agency (EMA PDCO), a scientific committee responsible for activities on medicines for children.
Becoming a Board Member made me feel honoured by the decision of EURORDIS Members. With this expressed great power of trust comes the great responsibility for our community, but this is a task that I feel devoted to.Tomasz Grybek
Anna was diagnosed with Cystic Fibrosis (CF) at the age of 6 months and her father was one of the founders of the HCFA. She was elected to the Board of Directors of HCFA in 2003-2005, as the General Secretary in 2015-2017, and since 2018, she has been the President of the organisation. In 2017-2019 she was the General Secretary of the Hellenic Federation of Associations for Rare Diseases, and since 2021 she has been a Board Member of Rare Diseases Greece, advocating for rare patients.
During her 12 years voluntary service as a patient advocate, she has facilitated significant improvements to healthcare conditions in Greece, especiallyfor people living with CF. She has contributed to the setting up adult of CF units and the national patient registry, improved access to care and medicines, organised programs and conferences for patients, improved access to lung transplants, and raised public awareness of CF and other rare diseases, proving that a rare disease patient association can positively transform the lives of patients.
It is a great pleasure to be elected to the Board of Directors of EURORDIS and to be a part of the European rare disease community. With the experience and knowledge of the new and old EURORDIS Board Members, including distinguished representatives, patients and parents from different countries with different rare diseases, we join our forces all together in order to eliminate inequalities, to improve the quality of life of patients suffering from rare diseases across Europe and to face the new challenges for our rare community.Anna Spinou
Graham is amongst the earliest survivors of esophageal atresia (EA).
In 2008 he became a Board member of TOFS (the UK patient group for EA) and he continues to lead TOFS’ engagement with medical professionals and researchers.
In 2011, he led the founding of EAT (Esophageal ATresia Global Support Groups e.V.), the international federation of EA patient groups, which is based in Stuttgart. Graham served as its Chair for ten years, and he continues to support the federation as its Special Patient Advisor. He has worked closely with INoEA, an international multi-disciplinary group of medical professionals with a special interest in EA and has been a presenter and/or moderator at each of the federation’s conferences.
In 2017 Graham became Lead ePAG for ERN-ERNICA, and as a member of the EURORDIS ePAG steering group, he has been particularly active in supporting initiatives to improve patient-clinician engagement; currently he is supporting the development of the EURORDIS Patient Partnership Framework.
It is a great honour to have been elected to the EURORDIS Board of Directors. I hope to add value by bringing my personal perspective as a survivor of a rare congenital malformation together with my experience of working with national and international patient support groups, and with clinical networks.
I look forward to working with my colleagues in sustaining and developing the advocacy undertaken by EURORDIS on behalf of rare disease patients and their families, and in supporting specific initiatives such as research and the European Referent Networks.Graham Slater
Board of Officers:
- Avril Daly, President
- Dorica Dan, Vice-President
- Simona Bellagambi, Vice-President
- Geske Wehr, General Secretary
- Anna Arellanesová, Deputy General Secretary
- Alain Cornet, Treasurer
- Terkel Andersen, Immediate Past President
- Alexandre Méjat, Director
- Rebecca Tvedt Skarberg, Director
- Kirsten Johnson, Director
Rhiannon Walls, Junior Communications Manager