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…
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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…
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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…
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We empowered a community that deserves to be heard. #RAREvolution Berlin, Germany – 24 March 2023. The seventh edition of the RE(ACT) Congress and the fifth edition of the IRDiRC Conference were held jointly in-person in Berlin (Germany) from 15-18 March 2023. The event was organized by the BLACKSWAN Foundation in collaboration with the International…
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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…
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In the context of EJP RD’s ERN Workshops, a workshop on “on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)” is being organized by Giovanni Mosiello, Rafal Chrzan, Jean Marie Jouannic, and Giovanni Montini. The in-person event, which aims to train healthcare providers from different ERNs involved in the clinical research on MMC…
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As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme that will take place from October 26th – 27th at MUG in Gdańsk, Poland. Registration is currently open but will close on April 26th. More information and registration here.
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The deadline for the “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” EJP RD- ERN Workshop has been extended until March 24th. Registration is open here. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April…
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Happy International Women’s Day ! EJP RD is proud to celebrate the women who represent 56% of the EJP RD staff working for progress, innovation and for the benefit of everyone with a rare disease.
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…
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