Apply now to join the 9th Rare Disease Summer School organized by ITINERARE, a recently established University Research Priority Program of the University of Zurich focusing on “Innovative Therapies in Rare Diseases”. The Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau) close to Zurich from July 04th to 07th, 2023. Please refer to the website for more information on the ITINERARE Rare Disease Summer…
On 27 April 2023, ERA-LEARN is organizing an online event focused on the implementation of co-funded European Partnerships. The target audience for this event includes coordinators and beneficiaries of co-funded European Partnerships who are looking for additional support in implementing their projects. Main agenda items: Welcome and Introduction Status of European Partnerships Governance and implementation of co-funded European Partnerships…
The World Health Organization (WHO) is seeking experts to serve as members of the Strategic Advisory Group of Experts on In Vitro Diagnostics (SAGE IVD). This “Call for Experts” provides information about the advisory group in question, the expert profiles being sought, the process to express interest, and the process of selection. For more information on SAGE IVD: WHO Strategic Advisory…
The European Joint Programme on Rare Diseases, alongside TRANSCAN and the Innovative Health Initiative were selected by ERA LEARN to investigate how partnerships navigate the process of translating research activities into medical and health innovations for the benefit of patients, the European health systems and society. The report is available here. The aim of this…
The World Duchenne Organization is organising the Duchenne Care Conference 2023. This online conference is taking place on June 7 and 8 from 15:00 – 18:00 CEST. This conference provides a unique opportunity for healthcare professionals and patient organizations around the world to connect and learn from the latest insights on Duchenne care in a…
Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases Research Consortium (IRDiRC) to deliver diagnostic tests for most rare diseases by 2020, invites all its partners to attend the Solve-RD Final Meeting 2023 in Prague (Czech Republic) or online. The meeting will take place on 24-26 April 2023 and the registration deadline for…
Deadline to submit applications: May 4, 2023 The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults. Through the support of prospective natural history and/or biomarker studies with…
World Duchenne Organization is thrilled to announce that the applications for Duchenne Centers Accreditation are now open. The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy. Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus guidelines. The program…
The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias and supported by EJP RD took place on February 28 & March 1, 2023. The presentations are now available here: https://www.rarediseases-conference.com/history/presentations-2023/ Following the success of the previous two years and having advanced the policy agenda on…
The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies. ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. Interested candidates are invited…