Save the date and register now for this upcoming Symposium on cross-border healthcare in the DE-NL border region. Check out the agenda and register for online participation or you can attend in person in Groningen, the Netherlands.
APPLY: ERDERA Networking Support Scheme (NSS) funding call
The European Rare Diseases Research Alliance (ERDERA) has a call for the Networking Support Scheme (NSS). The deadline for this round of funding is open until early October. The aim of the NSS is to bring rare disease and the rare cancer community together across borders, disciplines and sectors.
This call will be open until April 2029 with applications being reviewed on a six-monthly basis.
To be eligible, applicants must plan a networking event with a clear rare disease or rare cancer research focus and address both aims of the call: promoting knowledge exchange and supporting greater inclusion of underrepresented [...]
NEW ePAG: Laura Maag from Surrénales
We are pleased to welcome Laura Maag as a new patient representative for the French association Surrénales. A dedicated member of the organization for over 16 years, Laura brings a wealth of experience and insight into adrenal conditions. She has actively contributed to key initiatives such as the European Emergency Card project and is deeply committed to advocating for patients’ needs. Her expertise and passion make her a valuable addition to the Endo-ERN community as we work together to improve quality of life for those living with rare endocrine conditions.
Welcome Laura!
COMPLETE: Short survey to assess treatment of (older) adults with XLH.
Cristina Eller-Vainicher and Giovanna Mantovani at member institution Fondazione Cà Granda IRCCS Ospedale Maggiore Policlinico, Milan, Italy are currently conducting an international survey to investigate current practices, access disparaties, and regulatory differences regarding Burosumab treatment in X-linked hypophosphatemia (XLH) with particular focus on:
Challenges in the transition phase from paediatric to adult care Access and treatment continuity for patients over the age of 65This initiative is especially relevant as, in Italy, adult access to Burosumab is limited: after the age of 18, treatment is reimbursed in the presence of an active fracture or pseudofracture only, and, after the age [...]
SAVE THE DATE: 8th TALENT Conference, 11-13 February, 2026
Register now for the upcoming Transition and Adolesence Endocrine Disease Management (TALENT) meeting. Check out the agenda and full registration information.
NEW ePAG: ePAG Marc Büdenbender – Endo-ERN
We are pleased to welcome new ePAG Marc Büdenbender to Endo-ERN and MTG1.
Marc joined the board of Let’s Cure ACC after surviving stage IV adrenocortical carcinoma, driven by a strong desire to support others coping with this very rare and life-threatening disease. Becoming a member of the ePAG within Endo-ERN allows him to take that commitment to the next level — by working collaboratively with other patient representatives and medical experts in the field of rare adrenal disorders to improve patient care across Europe, equally and consistently, from diagnosis through [...]
FUNCTIONING NEUROENDOCRINE TUMOUR SYNDROMES: BIOCHEMICAL, GENETIC, IMAGING WORKUP AND THERAPEUTIC MANAGEMENT
Recordati Rare Diseases Foundation is hosting a European Society of Endocrinology (ESE) endorsed course that is suitable for endocrinologists, nuclear medicine, physicians, pathologists, and oncologists.
Taking place in Milan, Italy, 6-8 November, 2025 this is an in-person meeting.
Scientific Organising Committee:
Prof. Wouter de Herder – Erasmus Medical Centre, Rotterdam, Rotterdam, The Netherlands Prof. Diego Ferone – IRCCS Ospedale Policlinico San Martino, University of Genoa, Italy Prof. Vera Popovic-Brkic – Professor of Internal Medicine/Endocrinology, Medical Faculty, University of Belgrade, Serbia Prof. John Wass – Department of Endocrinology, University of Oxford, UK
Format: small groups for enhanced interactivity, networking [...]
COMPLETE: ERDERA ATMP Prioritisation Survey
European Rare Disease Research Alliance (ERDERA) invite you to share your expertise to help determine which factors matter most – from unmet medical needs to psychosocial impact and research readiness. Your input will ultimately directly influence future research finding and therapeutic innovation for are diseases. Developing Prioritising Cristeria for Advanced Therapies for Rare Diseases – Guiding ATMP Development Through Structured Criteria
You can find below:
survey link A short video and PPT explaining the project and the rare disease prioritisation framework The Detailed FrameworkIt will take [...]
4th International Workshop on Klinefelter syndrome and other supernumerary sex chromosome abnormalities
The 4th International Workshop on Klinefelter syndrome with the theme: A lifelong journey: new answers to old questions will be held 8-10 October 2025 at the Padova Botanical Garden, University of Padova – UNESCO World Heritage Site.
You will find an overview of the event here and registration information here.
The International Scientific Committee is:
Alberto Ferlin, Italy
Claus Gravholt, Denmark
Anders Juul, Denmark
Armin Raznahan, USA
Anne Skakkebæk, Denmark
Hanna Swaab, The Netherlands
Nicole Tartaglia, USA
Sophie van Rijn, The Netherlands
Joachim Wistuba, Germany
SAVE THE DATE: Endo-ERN General Assembly (GA)
Dates: Monday 20 and Tuesday 21 April 2026
Location: Athens, Greece
Programme: Start: Monday, 20 April 2026 9:00 starting with SC/AB Meeting followed by general programme at 10:30.
End: Tuesday, 21 April 2026 at 13:45 ending with Farewell Lunch
We are very much looking forward to gathering once again in person with all Endo-ERN members.
If there is anything specific you would like to see included in the programme, please let us know by contacting the project office. We are happy to take your suggestions into account during the planning phase.
For now, we kindly ask [...]
