Four European Reference Networks (ERN-EYE, ERKNet, Endo-ERN, ERN-ITHACA) have teamed up to establish a consensus statement and recommendations for Bardet-Biedl syndrome (BBS) providing guidance for the relevant experts.
“This consensus statement also emphasizes on initial diagnosis, monitoring and lifelong follow-up, and symptomatic care that can be provided to patients and family members according to the involved care professionals.”
Register now for this upcoming Endo-ERN webinar.
Genetic obesity is associated with difficulties in the regulation of appetite and satiety, often resulting in behavioural difficulties around food and consequent severe obesity. GLP-1 agonists affect appetite and satiety and may benefit these patients. In this webinar, the role of GLP-1 agonists in genetic obesity conditions such as Bardet Biedl, Alström and Prader-Willi syndromes will be discussed, and the impact of behaviour on the patient and carers will be explored.
Chaired by MTG5 Chairs Charlotte Höybye, Adult chair, Karolinska University Hospital, Sweden & Susan O’Connell, Paediatric chair, Children’s Health [...]
Register now for this upcoming webinar organised by Endo-ERN’s MTG3.
Wednesday 9 October at 16:00-17:00 CEST
SWEET: the role of a worldwide registry to investigate rare diabetes
Chaired by: Felix Reschke, Hannoversche Kinderheilanstalt, Diabetes Center for Children and Adolescents, Hannover, Germany
Speaker:
Thomas Danne, Nova Medical School, Lisboa, Portugal & Breakthrough T1D, New York
After attending the webinar attendees will have a greater understanding of the SWEET registry and specialist network and the work that they do. This is a valuable resource for clinicians managing paediatric rare diabetes cases.
Accreditation statement
The SWEET- the role [...]
Endo-ERN ePAG Bernd Rosenbichler shared a recent event organised by a local representative that featured his talented son Ben.
“Erich Irlstorfer, member of the German Bundestag, took up the topic of rare diseases almost 1.5 years ago – as a non-partisan initiative. He organized over 60 events with several thousand participants on the topic of Rare in Bavaria. He is in talks with European politicians to give the topic even more space. Other German states are following and also taking action. He brings his experiences and demands to the German Bundestag and to the political committees.
On July 13, he [...]
The Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN) project has put out their first Bullet Point Newsletter. JARDIN is a huge and complex project that is met with very high expectations from the EC and member states. Check it out!
The Endo-ERN covers under its umbrella a broad range of endocrine disorders, and a significant number of these entities are caused by genetic variants. The underlying disorders are commonly rare and research, diagnostic testing and treatment are fragmented. Clinically, the disorders covered by Endo-ERN are heterogeneous, as are their genetic basis.
However, the genetic mechanisms behind the disorders as well as the genetic testing strategies are very similar. The last years have seen considerable improvement of genetic testing and – as a consequence – of the development and implementation of personalized treatment strategies.
The need to implement and run [...]
July 2025 The survey is now closed and the research complete.
Walden University in Minneapolis, Minnesota, USA has a new study about the experiences of managing and living with autoimmune Addison’s disease in the younger and newly diagnosed adults. Researcher Mathew Horodner is seeking English speaking patients aged 18-30 for a video interview that will audio-recorded.
The criteria has been expanded and you may now qualify to particpate. Check out the new flyer or contact researcher Mathew Horodner.
Register now for this European Society of Endocrinology (ESE) endorsed course being held 17-19 October Stockholm, Sweden.
This event is a postgraduate course aimed at adult and paediatic endorcinologists both trained and in training. You can expect expert-led small groups for enhanced interactivity, networking and sharing of experiences, workshops, debates, and case presentations by attendees.
Scientific Organising Committee
Prof. Olle Kämpe – Center of Molecular Medicine, Karolinska Institute, Stockholm, Sweden Prof. Eystein Sverre Husebye – Department of Clinical Science, Haukeland University Hospital-University of Bergen, Bergen, Norway Prof. Vera Popovic-Brkic – Professor of Internal Medicine/Endocrinology, Medical Faculty, University of Belgrade, [...]
The new CPMS 2.0 system went live 31 May, 2024.
For the next few months Endo-ERN will continue to use the original CPMS, as we start preparation for a network-wide migration to the new CPMS 2.0 system. Existing users will automatically have an account in the new system once data migration occurs, using their same login details for EU login. If you want to test the system ahead of our network’s formal migration, please contact our helpdesk.
With the new system comes formal steps for each of our member HCPs. The new system security documentation will be shared [...]
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.
