Patient Advocacy Group Affiliate Membership
Through ESE’s Patient Advocacy Group (PAG) Affiliate Membership, PAGs can be formally affiliated to ESE, and benefit from support to assist them in achieving their objectives.
Why Join ESE as a PAG Affiliate Member?
All of ESE’s activities are underpinned by our ambition to provide the best possible care and support to patients with endocrine diseases.
PAGs play an essential role in ensuring that patients throughout Europe have access to the best information about their condition as well as to diagnosis and care. We see this as a two-way partnership: PAGS are uniquely placed to provide an important patient perspective to inform ESE’s initiatives, and ESE can support PAGs in their activities by giving patients a voice in our policy and advocacy strategies and providing access to up-to-date medical information.
The ESE PAG Affiliate Membership is free of charge to Patient Groups who meet all the criteria below.
Who Can join?
A PAG can apply for ESE PAG Affiliate Membership if they:
- 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 or scientific advisory group or consultant supporting the PAG in its medical information objectives, of which at least one medical advisor or consultant is (or agrees to become) an ESE Member
- Are transparent about support received from industry sources and the purpose of such support.
Please note that we also use the term Patient Advocacy Group (PAG) to 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.
When you join ESE, you'll get:
- Your PAG's name and website link included on the ESE PAG Membership page
- License to use the ‘ESE Affiliated Partner’ logo on website and materials
- Membership of the PAG Board, which meets twice a year.
- A reduced rate for ESE individual memberships for your PAG representatives
- Access to the European Congress of Endocrinology (ECE)
- The opportunity to apply for grant support for specific PAG initiatives
- Access to the ESE endorsement process for PAG-initiated activities (subject to conditions).
- 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)
- British Thyroid Foundation
- 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