The Endo-ERN Transition of Care Working Group, invites you to complete this survey.
The survey aims to gather valuable insights into the current practices, challenges, and opportunities in managing the transition of care for patients with rare endocrine diseases, focusing on both pediatric and adult care perspectives.
Who should complete the survey?
Healthcare professionals directly involved in transition care for patients with rare endocrine conditions, from both pediatric and adult sides.
Time required: Approximately 15–20 minutes.
Dissemination Request
We kindly ask that the survey link be shared with all Endo-ERN members, including Reference Centres and associated [...]
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Register now for this event organised and featuring Endo-ERN members focused on the topic of transition.
Hosted in Rome, event dates are 12-13 February, 2025. Topics and speakers include:
Adrenal insufficiency and congenital adrenal hyperplasia: the new therapeutic approaches, Svetlana Lajic, Karolinksa University Hospital, Stockholm, Sweden
Fertility issues in adrenal adenomas and carcinomas, Nicole Reisch, Ludwig Maximilian University, Munich, Germany
Management of bone disease in parathyroid disorders, Eva Kassi, National and Kapodistrian University of Ahtens, Greece
Management of bone and growth disorders in DSD, Corinna Grasemann, Katholisches Klinikum Bochum, Germany
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The 12th ESE Young Endocrinologists and Scientists (EYES) Meeting is taking place on 26-28 September 2025, in Milan, Italy.
More information is available here.
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The European Congress of Endocrinology (ECE) will take place in Prague, Czech Republic, from 9 – 12 May 2026.
Save the Date! Further details will be announced in due course.
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REGISTER NOW 2025 will be an important year for Together For Rare Diseases, as we continue to build bridges in the European rare disease research community.
The 2nd webinar organised by Together4RD & ERICA will take place Thursday, 16 January. Industry brings resources and knowledge beyond funding, an articulation of the contribution of private sectors in public private partnerships in rare disease research. This webinar will showcase how collaboration with industry can accelerate rare disease researchwith a specific example of a partnership between ERN BOND the European Reference network on Rare Bone Diseases and Sanofi.
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The European Rare Diseases Research Alliance (ERDERA) Joint Transnational Call (JTC) for Proposals 2025 is now open! Submissions are invited from research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”.
This JTC will build upon the significant progress made by previous European Joint Programme on Rare Diseases (EJP RD) calls, with the aim of fostering international partnerships to develop innovative therapies for rare diseases. National and regional funding bodies from over 30 countries, including France, Belgium, Germany, Italy, and all Baltic [...]
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Register now for the next joint ESE, Endo-ERN and ESPE webinar: Hypothalamic Obesity: Treatment modalities and pre-requisites for treatment efficacy
Speakers:
Ulrich Dischinger (Germany)
Hanneke van Santen (Netherlands)
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The 62nd Annual European Society for Paediatric Endocrinology (ESPE) will take place 16-18 November in Liverpool, England.
The Endo-ERN project office will attend and host a booth and a symposium. If your institution is a member and you are attending ESPE please complete this survey.
Endo-ERN symposium Sunday, 17 November 1430-1600
Location: Hall 3
Chaired by Olaf Hiort, Universitätsklinikum Schleswig-Holstein, Lubeck, Germany
Future of Registers for Rare Disease: the example e-REC, Erica van den Akker, Erasmus MC Children’s Hospital, Rotterdam, the Netherlands
Genetic testing in DSD or rare forms of adrenal insufficiency– what is the relevance [...]
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This 5-day course will cover the biology of human growth and clinical management of growth disorders. Teachers are internationally recognised experts in paediatric endocrinology and growth.
The course is directed towards clinical fellows and recently graduated pediatric endocrinologists and is limited to 26 participants. The course leaders will select a diverse group of fellows to ensure all participants are at a similar level of training. Proficiency in English is required, and while research experience is beneficial, it is not a prerequisite.
The course fee SEK 16 000 (approx. €1400, $1500, £1200) includes all teaching material, full board and lodging. The [...]
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The RE(ACT) Congress & IRDiRC Conference 2025 – A Rare Opportunity in Rare Disease Research.
The countdown is on for the 8th RE(ACT) Congress and the 6th IRDiRC Conference, a pivotal event in rare disease research and innovation.
From March 5-7, 2025, the city of Brussels will host this gathering of global experts, researchers, and advocates.
This event is organized by the BLACKSWAN Foundation, the International Rare Diseases Reasearch Consortium (IRDiRC), and the newly established European Rare Diseases Research Alliance (ERDERA), with the support of EURORDIS-Rare Diseases Europe, and Rare Diseases International (RDI).
Abstract Submission Deadline is 31 December, 2024.
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