As one of the joint undertakings under Horizon Europe, a draft Strategic Research & Innovation Agenda (SRIA) for the Innovative Health Initiative (IHI) has been published on the European Commission (EC) website. IHI will build on the successes of and lessons learnt from the Innovative Medicines Initiative (IMI). The goal of IHI is to help…
As part of the training activities proposed by the EJP RD, a 3-day training course titled « Quality assurance, variant interpretation and data management in the NGS diagnostics era » is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed the international research community: clinicians, medical specialist, laboratory scientists (EBMG-registered), junior laboratory scientists,…
As part of the training activities proposed by the EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day online training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database…
The French Foundation for Rare Diseases (FFRD) in parternship with Association contre les Maladies Mitochondriales (AMMi) are supporting and stimulating biomedical research on MTFMT gene and Leigh syndrome. In the context of the partnership, a call for research projects to develop research on Leigh syndrome and the MTFMT gene is currently open and will close on August 31st at 17:00 CET. All…
The Eva Luise and Horst Köhler Foundation in Germany, which has been committed to research into rare diseases since 2008, announces its « Rare Diseases in Times of a Pandemic » care research project for 2021 in collaboration with the Alliance of Chronic Rare Diseases (ACHSE e.V.). The current pandemic poses particular challenges for the health system.…
EJP RD is organising an integrative research and innovation strategy meeting on the theme of alignment of national rare disease strategies with the EJP RD targeted towards policy makers and persons involved in national, EU, and international rare diseases strategies. The fully online strategy meeting will take place on 8th July 2021 from 09:30 – 17:00 CET.…
The European Research Network for rare skin diseases (ERN-Skin) is launching a series of scientific webinars on rare skin diseases. Each 1-hour webinar will consist of a 30-minute presentation and a 30-minute discussion. The two upcoming webinars are: June 29th from 13.00 – 14.00 CET: Genetic discoveries in ichthyosis – Keith Choate Chaired by Juliette…
The European Bank for induced pluripotent Stem Cells (EBiSC) is a non-profit induced pluripotent stem cell (iPSC) repository based in Germany and the UK that has collected, safeguarded and distributed >900 iPSC lines since 2014. These lines were generated in diverse research projects across the EU and USA, including StemBANCC, HipSci and IMI-ADAPTED. Through these experiences,…
The Share4Rare Project announces its 1st open call for patient-driven research projects targeted towards patient organisations and researchers in the field of rare diseases to apply for conducting their patient-centred studies within the platform. The call is currently open but will close on July 15th at 17:00 CET. Applicants who are selected can avail the following benefits: Facilitation of communication with patients, their carers…
The European Expert Group on Orphan Drug Incentives (OD Expert Group), in collaboration with media partner EURACTIV, is organising a webinar on how to address the unmet needs of rare disease patients by transforming the European Orphan Medicinal Products (OMP) landscape. The webinar will take place on June 11th from 14.30 – 16.00 CET. In this online event targeted towards the broad rare disease community,…