Patient Advocacy Group Affiliated Membership

In everything that ESE does, we are driven by our ambition to provide patients with endocrine diseases the best possible care.

ESE considers Patient Advocacy Groups (PAG) essential partners in ensuring that patients throughout Europe have access to the best information about their condition as well as to diagnosis and care. ESE considers this a bi-directional process, whereby PAGs can help inform ESE about better integration of the patient perspective in the initiatives of the Society, and ESE aims to work together with, and support PAGs, in their ambitions towards developing information resources, providing access to up-to-date medical information and insights, and by including the patient voice in its policy and advocacy strategies.

Through ESE’s Patient Advocacy Group Affiliate Membership, PAGs can be formally affiliated to ESE, and benefit from support to assist them in achieving their objectives.

The ESE PAG Affiliate Membership is free of charge.

Current members

• Acromégales pas Seulement
• Addison's Disease Self Help Group UK
• AdrenalNET (BijnierNET)            
• AGS- Eltern- und Patienteninitiative e.V.
• AIPAd Italy
• ANDO Portugal
• Association for Multiple Endocrine Neoplasia Disorders (AMEND)
• Bundesverband Schilddrüsenkrebs - Ohne Schilddrüse leben e.V.
• CAH Support Group (UK)
• Cushing's Support and Research Foundation
• Danish Addison Society
• European MEN Alliance e.V. (EMENA)
• hypoPARA NORGE
• Hypoparathyroidisme France
• International Prader-Willi Syndrome Organisation (IPWSO)
• Let's Cure ACC
• Nederlandse Hypofyse Stichting (Dutch Pituitary Foundation)
• Netzwerk Hypophysen -und Nebennierenerkrankungen e.V.
• Parathyroid UK
• Pituitary Foundation UK
• SOD Italia Associazione Italiana Displasia Setto Ottica e Altri Disordini Neuroendocrini
• The Dutch Adrenal Society NVACP
• Thyroid Federation International
• Turner Syndrome Support Society UK
• Vivre sans Thyroïde
• World Alliance of Pituitary Organizations

Who can join?

A PAG can apply for ESE PAG Affiliate Membership provided they fulfil the following criteria:

• Have a clear endocrine disease focus;
• Have their legal base in Europe, or if this is not the case, can demonstrate a clear focus of activity on Europe;
• Have a patient support and information offering that is accessible to patients across Europe
• Have a formal not-for-profit status, structure and bylaws, governing the functioning of the PAG, as defined by the country of registration;
• Have a clinical and/or scientific advisory group or consultant supporting the PAG in its medical information objectives, of which at least one Medical Advisor / Consultant is (or agrees to become) a member of the European Society of Endocrinology;
• Provide transparency on the support being received from industry sources and the purpose of such support.

Please note that by the term PAG – Patient Advocacy Group we also refer to patient support groups, patient organisations, patient groups and any other form that applies to organisations that represent patients’ interest and fulfil the above criteria.

Membership benefits

• Inclusion of the PAG name and website link on the ESE PAG Membership webpage
• Participation in the PAG Affiliate Membership Board. The remit of the board is to be a discussion forum between ESE and its PAG Affiliate Members for all matters relating to their collaboration. The board will meet twice a year.
• Access of individual PAG representatives to the ESE individual membership scheme at a reduced rate
• Access to the European Congress of Endocrinology (ECE)
• Possibility to apply for grant support for specific PAG initiatives
• Access to the ESE endorsement process for PAG initiated activities (subject to conditions).

The PAG Affiliate Membership Board

During the European Congress of Endocrinology (ECE) 2022 Congress in Milan, the ESE PAG Affiliate Members Board had its inaugural meeting. This Board consists of a representation of ESE with delegates from the organisations that are a PAG Affiliated Member to ESE. 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 Jérôme Bertherat, ESE President-Elect and co-chaired by three representatives of the PAGs elected by the PAG Member organisations; 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 inaugural meeting addressed the functioning of the Board, as well as an initial discussion about the priorities of the Board. Inequalities around access to care and medication across Europe, building and supporting patient advocacy, and patient focused education are the three highlighted areas where a collaborative effort of PAGs and ESE is suggested, ultimately to better support patients with endocrine disorders around Europe.

Apply here

For questions or to discuss your application please contact ESE at info@ese-hormones.org