SUPPORT: Alström Syndrom e.V. concert
The Alström Syndrom e.V. invites you to a benefit concert in Landau-Wollmesheim, Germany on Friday, 12 July, at 5.00 pm.
Alström syndrome is one of around 8000 rare diseases. The association is committed to networking the few people affected, for better medical care and for more awareness of all rare diseases. Proceeds from the concert will help to achieve these goals. Above all we want to celebrate life and are looking forward to a wonderful summer evening with great live music!
The Frankenthal duo Sillis will be performing refined acoustic rock’n’pop with two voices, a guitar and a violin. In [...]
Updated Endo-ERN June newsletter
SAVE THE DATE: European Society of Paediatric Endocrinology (ESPE) 2026
Save the date for the 64th ESPE 8-10 September, 2026 to be held in Marseilles, France.
More information will be available closer to the event.
PARTICIPATE: NEW ESE POSITION STATEMENT Adrenal Insufficiency (AI)
Attention Endo-ERN representatives! You are invited to participate in this important two-year project to develop a new ESE position statement: Self-management and support services for patients with Adrenal Insufficiency (AI).
This two-year project aims to:
Evaluate factors that influence self-managment for patients with AI (international cross-sectional survey adapted and translated in several languages) Explore current patient educaiton approaches and support services across Europe Develop an evidence-based Euorpean Position Statement using Delphi research methodologyYou are invited to participate as a:
Principle Investigator to recruit patients with AI from your centre or country Patient advocacy group representives to disseminate the survey [...]APPOINTED: Johan de Graaf appointed to EURORDIS Board
Great news! Endo-ERN ePAG Johan de Graaf has been elected to EURORDIS Board of Directors during the organisation’s annual General Assembly 2024. Wishing you success Johan!
The full report on the EURORDIS website stated the following:
The elections saw the appointment of six members to the Board, including four re-elected and two newly elected members.
Avril Daly, Chief Executive Officer of Retina International, was re-elected to the Board. Following a meeting of the EURORDIS Board of Officers (taking place after elections) to the Board of Directors, Avril has been confirmed to continue as President [...]
REGISTER: ESE Young Endocrinologists & Scientists (EYES) Meeting
The 11th ESE Young Endocrinologists & Scientists (EYES) Meeting will take place on 6-8 September, 2024, in Helsinki, Finland. Programme now available.
Registration and abstract submission are now open!
EYES 2024 is a European Society of Endocrinology (ESE) early career meeting (run by the early career group of the Finnish Endocrine Society). Delegates must be early career investigators |ECIs) who are <10 years post-PhD, post-specialisation, Masters/PhD student or a clinician in-training. All meeting participants are expected to be current members of ESE.
Presenting authors of abstracts must register for and attend [...]
WELCOME: NEW ePAG Esther Bloem
Endo-ERN would like to welcome our newest ePAG Esther Bloem.
Esther has been utilising her skills and experience to support and educate patients. A policy advisor for the Dutch Thyroid Organisation (Schildklier Organisatie Nederland), she is involved in various projects and represents the patient’s perspective of people with thyroid disorders.
A scientist by training, Esther is committed to developing evidence-based support tools to help people with thyroid disorders. She created the online group coaching programme Quality of life while living with a chronic disease. Most recently a project that Esther is leading received funding from the ZonMw a [...]
SUPPORT NOW: EURORDIS Open Letter to the European Commission
EURORDIS has created an Open Letter to the European Commission outlining crucial steps for rare disease to be taken following next month’s European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives. Find the letter here and consider signing individually and/or as a representative of your instituition.
Deadline for signature Monday, 3 June, 2024.
NEW GUIDELINE: Familial hyperaldosteronism
A newly published Endo-ERN guideline was presented today at the European Congress Endocrinology in Stockholm – Familial hyperaldosteronism: an Endo-ERN clinical practice guideline. The guideline features 19 recommendations on the following topics:
Screening and diagnostic workup Therapy in FH Follow-up with patients with FH
Check out the guideline now.
