Exciting News! The EJP RD course “Innovative Therapies and Personalized Medicine for Rare Diseases” is officially live! Explore cutting-edge advancements in gene therapy, regenerative medicine, and beyond. Be a part of the revolution in rare disease treatment! Enroll now.
This course is a free course until Monday, 12 August.
The aim of the survey is to identify needs and priorities of academic stakeholders involved in clinical trials, integrating them into the work of ACT-EU. It seeks to address challenges in conducting clinical trials in the EU faced by ERNs and academics, highlight topics needing further clarification or discussion, and propose solutions for improving and accelerating clinical trials. Academic stakeholders are encouraged to contribute ideas for improvement across various aspects of clinical trial governance and implementation, clinical trial methodologies and data analytics, regulatory processes, safety monitoring, training, and emergency preparedness.
Please make your contribution to the survey [...]
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 [...]
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 [...]
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 [...]
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 [...]
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.
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.
Are you attending the European Society of Endocrinology (ECE) in Stockholm, Sweden? You are invited to the Endo-ERN Symposium on Tuesday, 14 May from 12:00-13:30. Check out the agenda below:
1200
Endo-ERN introduction, Prof. Alberto Pereira, Amsterdam University Medical Center, the Netherlands & Endo-ERN Coordinator
1210
Guidelines on familial hyperaldosteronism, Prof. Olaf Dekkers, Leiden University Medical Center, the Netherlands and Prof. Paolo Mulatero, University of Torino, Italy
1240
SDHB and SDHD guidelines, Prof. David Taieb, Aix Marseille University, France
1305
Pituitary tumors: Looking for patients reported outcomes not yet managed, Dr. Elena Valassi, Universitat Internacional de Catalunya, Barcelona, Spain.
[...]
The first European endocrinology textbook developed by the members of European Reference Network on Rare Endocrine Conditions (Endo-ERN).
Discover this extensive illustrated textbook of endocrinology created primarily for students and residents. Written by experts of the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the Handbook of ENDOCRINOLOGY and METABOLISM describes commonly managed conditions, as well as providing information about exceptional rare endocrine conditions.
Topics covered include common conditions of the endocrine system, metabolic disorders, inherited conditions, and endocrine emergencies. With clinical application in mind, the chapters include illustrations and tables, as well as the latest information about [...]
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