Patient Advocacy Groups (PAGs) play a key role in the support and management of patients with endocrine conditions. ESE has a PAG Affiliate Membership Scheme, allowing us to work closely with these groups to ensure that the patient’s voice is reflected in everything we do. Our affiliated PAGs work together within PAG Communities, aligned with ESE’s Focus Areas, sharing their knowledge and expertise with each other and the wider endocrine community.
You can connect with our affiliated PAGs both in person and online – if you’re joining us in Prague, make sure to visit the Patient Experience Zone in the first floor foyer, where you can meet with representatives from these communities, discuss ways in which you can collaborate with these important groups, and find information and resources to support your research and practice.
If you can’t join us in Prague, you can still hear how our PAGs work with researchers, clinicians and other endocrine specialists by watching the Patient’s Voice Sessions. These sessions bring together clinicians and patient advocates to discuss how collaboration can ultimately benefit patients. The Patient’s Voice sessions will take place in the ECE Hub throughout the day on Sunday 10 May, and will be live streamed and recorded so you can catch up on demand.
View the Congress schedule on Sunday 10 May to find out about these important sessions.
ESE’s PAG Communities
Adrenal and Cardiovascular Community:
• Addison's Disease Self Help Group UK
• AGS- Eltern- und Patienteninitiative e.V.
• AIPAd Italy
• CAH Support Group (UK)
• Cushing's Support and Research Foundation
• Danish Addison Society
• HYBI
• Netzwerk Hypophysen -und Nebennierenerkrankungen e.V.
• Polish Association for People with Addison's Disease and Adrenal Insufficiency
• Turner Syndrome Support Society UK
• Worldwide Adrenal and Pituitary Organizations
Calcium and Bone Community:
• ANDO Portugal
• European MEN Alliance e.V. (EMENA)
• hypoPARA NORGE
• Hypoparathyroidisme France
• Osteogenesis Imperfecta Federation Europe (OIFE)
• Parathyroid UK
Diabetes, Obesity, Metabolism and Nutrition Community:
• International Prader-Willi Syndrome Organisation (IPWSO)
• Turner Syndrome Support Society UK
• Verity PCOS
Endocrine-related Cancer Community:
• Association for Multiple Endocrine Neoplasia Disorders (AMEND)
• European MEN Alliance e.V. (EMENA)
• Let's Cure ACC
• Parathyroid UK
Pituitary and Neuroendocrinology Community:
• Acromégales pas Seulement
• Cushing's Support and Research Foundation
• HYBI
• International Prader-Willi Syndrome Organisation (IPWSO)
• Nederlandse Hypofyse Stichting (Dutch Pituitary Foundation)
• Netzwerk Hypophysen -und Nebennierenerkrankungen e.V.
• Pituitary Foundation UK
• Pituitary Gland Association Poland
• SOD Italia Associazione Italiana Displasia Setto Ottica e Altri Disordini Neuroendocrini
• Worldwide Adrenal and Pituitary Organizations
Reproductive and Developmental Community:
• AGS- Eltern- und Patienteninitiative e.V.
• Turner Syndrome Support Society UK
• Verity PCOS
Thyroid Community:
• Association for Multiple Endocrine Neoplasia Disorders (AMEND)
• British Thyroid Foundation
• Bundesverband Schilddrüsenkrebs - Ohne Schilddrüse leben e.V.
• Parathyroid UK
• Thyroid Federation International
• Vivre sans Thyroïde