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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Driven by excellence and patient care, the UEMS 1st Congress will be where all stakeholders concerned by the best possible medical practice come together, connect and learn from each other.
It is also an exciting opportunity to build on the rich offerings of the UEMS and benefit from the collective expertise of Europe’s medical community.
More information or pre-registration by email or check out the website www.uems.eu
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Endo-ERN ePAGs Johan de Graaf, Dutch Pituitary Foundation and Petra Brügmann (EMENA) with Endo-ERN colleague Emily White (Endo-ERN) and Dirk de Rijdt of the European Society Endocrinology prepared a poster Multistakeholder Mapping of Endocrine Medicine availability and shortages in Europe: Endo-ERN expert centres.
This poster was Best Poster at the European Rare Disease Research Coordination and Support Action consortium (#ERICA) at the first ERICA ERN Research Conference.
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Congratulations to Endo-ERN researcher Edward Visser, Erasmus MC: University Medical Center Rotterdam who won the Best Presentation Award in the category ORAL: CLINICAL Trials at the ERICA GA. The topic Thyroid hormone analogue (TRIAC) therapy for resistance to thyroid hormone in children.
The aim of the European Rare Disease Research Coordination and Support Action consortium (#ERICA), in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
ERICA hosted the first ERN Research Conference with a call to submit [...]
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