Patients are at the heart of everything we do to improve endocrinology research, diagnosis and treatment across Europe.
Here, you will find resources for patients and information about our partnerships with patient organisations.
Our work with patient groups
All of ESE's work is geared towards improving the diagnosis, treatment and care of patients with hormone-related diseases. We also support many programmes that specifically support patients, including the development of patient information leaflets and videos. Often this involves close collaboration with patient-led organisations, to make sure patients' voices and experiences are heard. Click on the images below to find out more.
Patient Advocacy Group (PAG) Board
The Patient Advocacy Group Board brings together representatives of Patient Advocacy and Support Groups to discuss the issues that matter to patients with endocrine-related diseases.
Patient Advocacy Group Membership
PAGs can be formally affiliated to ESE and benefit from support and networking opportunities through ESE's Patient Advocacy Group Affiliate Membership, completely free of charge.
After two successful events in 2022 and 2023, European Hormone Day will be back on 24 April 2024. This event brings together the endocrine community to raise awareness of the importance of good hormone health – #BecauseHormonesMatter! Watch this space for details on how to get involved.
Medical professionals participate in continuing education to keep their knowledge up to date so they can provide the best possible care for patients.
The BioMed Alliance, including ESE, produced this short video to show how important it is for doctors to have access to high-quality and unbiased continuing medical education.
Patient Education Videos
These educational videos explain a variety of hormone-related conditions to help patients understand their diagnosis.
Click to play each one.
Patient Information Leaflets
These information leaflets are a patient-friendly version of ESE's clinical guidelines on a range of hormone-related conditions. These have been developed in collaboration with expert clinicians and patient organisations.
Click to view each one.
Patient Information Leaflet for immune checkpoint inhibitor (ICI) therapy and hormone disorders
Patient Information Leaflet for women with pituitary adenomas before, during and after pregnancy
Patient Information Leaflet for individuals with adrenal incidentalomas
Patient Information Leaflet for Hypoparathyroidism
Patient Information Leaflet for Primary Hyperparathyroidism
Patient Guide to Hypoparathyroidism (PARAT Resource)
A Patient Parathyroid Disorders Guide During Preconception, Pregnancy and Lactation
Emergency Treatment Cards for Patients
With some endocrine conditions, patients may find themselves needing emergency treatment. In these situations, it is vital to inform healthcare providers of the patient’s relevant medical background immediately, so the patient gets the correct treatment.
Emergency cards or medical bracelets are a useful way to explain this quickly.
You can print out the cards below and keep them handy – just in case. Each one is available in multiple languages. These include cards in Ukrainian and Russian, which may be helpful for those affected by the current conflict.
Here are two additional resources you may find useful. These are not ESE resources, though we're very happy to endorse them.
Medikidz creates publications aimed at young children with information on specific diseases, including growth hormone deficiency and type 1 diabetes. This site has a useful library of health books in several languages.
This patient leaflet provides an introduction to the causes and symptoms of adrenal insufficiency and the tests used to diagnose this condition. It's endorsed by ESE, Addison’s Disease Self Help Group, Pituitary Foundation and the Royal College of Physicians and Society for Endocrinology.