The United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled « On the road towards COVID-19 recovery & delivery of the Sustainable Development Goals – Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority » along with the NGO Committee for…
The 5th European Aniridia Conference is being organised to enable the sharing of scientific knowledge about the rare genetic eye condition aniridia to prevent sight loss and deal with aniridia’s effects. This workshop has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity. The fully online conference will take place over two days from July 31st…
Interested in discovering the landscape of Translational Medicine? Learn from scientists in academia, industry and regulatory agencies and join the 2021 TMex winter school! EATRIS is organising the TMex (Translational Medicine Explained) Winter School that is targeted to PhD students in the second half of their PhD, early postdocs and other young scientists who are involved in biomedical…
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…