Established in 2022, the ESE Patient Advocacy Group (PAG) Board consists of a representation from 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 Mirjam Christ-Crain, ESE President-Elect.
The priorities of the ESE PAG Board, where a collaborative effort between PAGs and the Society are focused, fall into three main categories:
- addressing inequalities around access to care and medication across Europe
- supporting patient advocacy
- patient-focussed education.
Ultimately, the ESE PAG 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.
Chair: Mirjam Christ-Crain, Switzerland (co-terminous with office, President-Elect, 2025-2027)
From November 2025, with the number of ESE Affliated PAGs continuing to increase, the PAG Affiliate Membership Scheme was restructured into Communities aligned with ESE's Focus Areas. Each Community has nominated one or two of its members to represent the interests of the PAG Community at the PAG Board and in other key projects and discussions.
PAG Community Representatives:
- Caroline Andrews, Verity PCOS.
- Beate Bartes, Thyroid Federation International, Vivre sans Thyroide.
- Antonella Campodall’Orto, Associazione Italiana Pazienti Addison.
- Nora McNairney, IPWSO
- Jo Grey, AMEND
- Johan de Graaf, Dutch Pituitary Foundation
- Arlene Smyth, Turner Syndrome Support Society
- Julia Priestley, British Thyroid Foundation
PAG Affiliates:
- Ines Alvez, ANDO (Portugal)
- Manuela Brösamle, AGS-Eltern- und Patienteninitiative e.V.
- Petra Bruegmann, European MEN Alliance e.V. / Netzwerk Hypophysen und Nebennieren-erkrankungen e.V.
- Katja Hansen, Danish Addison Disease Association
- Agathe De Benedittis, Acromégales, Pas Seulement, France
- Leslie Edwin, Cushings Support and Research Foundation
- Sue Elford/Kaz Williams, CAH Support Group, UK
- Helen Hopkins, Parathyroid UK
- Johanne Amara, Hypoparathyroidisme, France
- Catherine Lamy, LetsCureACC, France.
- Muriel Marks, World Alliance of Pituitary Organizations, Netherlands.
- Perny-Ann Nilsen, hypoPARA, Norway
- Jay Sheppard, The Pituitary Foundation, UK.
- Harald Rimmele, Bundesverband Schildrüsenkrebs, Germany.
- Philippa Sharman, Addison’s Disease Self Help Group UK and Ireland
- Diana Vitali, Sod Italia
- Marta Baranska, The Pituitary Gland Association Poland
- Magdalena Weimer, Stowarzyszenie na rzecz osób z chorobą (Polish Association for People with Addison's Disease and Adrenal Insufficiency)
- Laila Ertnes, HYBI
- Inger-Margrethe Stavdal Paulsen, Osteogenesis Imperfecta Federation Europe
ESE Committee Members:
- Elena Valassi, Spain, co-terminous with office (Chair of the Rare Disease Committee, 2024-2027)
- Aldons Chua, UK, co-terminous with office (ESE Nurse Committee representative, 2024 -2028)
- ESE EYES Representative - to be confirmed
- 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.
