Established in 2022, the PAG Affiliate Membership Board consists of a representation of ESE and delegates from the organisations that are PAG Affiliate Members. The remit of this board is to be the discussion forum between ESE and its PAG Affiliate Members for all matters relating to their collaboration.
The Board is chaired by Prof Wiebke Arlt, ESE President-Elect and co-chaired by three representatives of the PAGs elected by the PAG Member organisations; currently Jo Grey, CEO of the Association of Multiple Endocrine Neoplasia Disorders; Peter Lakwijk, Treasurer of Thyroid Federation International and Johan de Graaf, Chair of the Dutch Pituitary Foundation.
The three priorities where a collaborative effort of PAGs and ESE are focused are inequalities around access to care and medication across Europe, supporting patient advocacy and patient-focussed education. Ultimately the PAG Affiliate Membership Board aims to better support patients with endocrine disorders around Europe.
Committee Remit
- To be the forum where the needs and interests of Patient Advocacy and Support Groups are the focus.
- To provide a forum to discuss issues of interest and suggest solutions for identified challenges where a common interest exists. Areas of common interest may relate to general educational efforts, disease awareness building efforts, stakeholder strategies, policy related initiatives, society and partner interactions, positioning of endocrinology in Europe.
- To provide a forum to inform and discuss about ESE strategy, upcoming activities and opportunities.
- To inform ESE of ongoing key activities planned and developed by PAGs.
- To improve communication and strengthen partnerships between ESE and its PAG Affiliate Members.
- To secure that all information related to PAGs in the ESE communication channels (website, social media) is up-to-date and relevant.
- In general, to advise and inform ESE structures (Committees, Focus Areas) about specific areas of discussion and where needed and appropriate, initiate follow-up discussion and action.
- Ines Alvez, ANDO (Portugal).
- Caroline Andrews, Verity PCOS.
- Beate Bartes, Thyroid Federation International, Vivre sans Thyroide.
- Johan Beun, AdrenalNet and The Dutch Adrenal Society NVACP.
- Manuela Brösamle, AGS-Eltern- und Patienteninitiative e.V.
- Petra Bruegmann, European MEN Alliance e.V. / Netzwerk Hypophysen und Nebennieren-erkrankungen e.V.
- Antonella Campodall’Orto, Associazione Italiana Pazienti Addison.
- Jette Christensen, Danish Addison Disease Association.
- Maité-Delphine Dubois, Acromégales, Pas Seulement, France.
- Leslie Edwin, Cushings Support and Research Foundation.
- Sue Elford, CAH Support Group, UK.
- Liz Glenister, Parathyroid UK.
- Natalie Grosset, Hypoparathyroidisme, France.
- Marguerite Hughes, IPWSO.
- Cathérine Lamy, LetsCureACC, France.
- Muriel Marks, World Alliance of Pituitary Organizations, Netherlands.
- Perny-Ann Nilsen, hypoPARA, Norway.
- Julia Priestley, British Thyroid Foundation.
- Ren Renwick, The Pituitary Foundation, UK.
- Harald Rimmele, Bundesverband Schildrüsenkrebs, Germany.
- Vick Smith, Addison’s Disease Self Help Group UK and Ireland.
- Arlene Smyth, Turner Syndrome Support Society.
- Kaz Williams, CAH Support Group.
- Diana Vitali, Sod Italia
- Jérôme Bertherat, France, co-terminous with office (President, 2023-2025)
- Sebastian Neggers, Netherlands, Ex-officio, co-terminous with office (ESE Rare Diseases Committee Co-Chair, 2023-2027)
- Sherwin Criseno, UK, Ex-officio, co-terminous with office (ESE Nurse Committee Chair, 2019-2024)
- Alberto Pereira, Netherlands, Ex-officio, co-terminous with office (Endo-ERN Representative, 2019-2023)
- Helen Gregson, Chief Executive Officer, Ex-officio, co-terminous with office
- Dirk De Rijdt, Director of Strategic Partnerships, Ex-officio, co-terminous with office
ESE Team member responsibility: Director of Strategic Partnerships.
