Networking Support Scheme (NSS) event on vascular liver diseases and associated complications

A funded networking event on vascular liver diseases and associated complications is being organised to give an update on current clinical and scientific concepts, as well as open questions in the field of vascular liver diseases. This workshop has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the…

ERN Workshop on future research on innovative diagnostics and interdisciplinary treatment for spina bifida (spinal dysraphism)

In the context of EJP RD’s ERN Workshops, an in-person workshop titled « Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment » aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina…

UN General Assembly formally adopts Resolution on Persons Living with a Rare Disease and their Families

Following a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of several Member States, the United Nations (UN) General Assembly has formally adopted on December 16th 2021 with the consensus of all 193 UN Member States the UN Resolution on Addressing the Challenges of Persons Living with a Rare…

EMA Webinar: Research in regulatory science – addressing the needs

The European Medicines Agency (EMA) is organising a virtual event on « Research in regulatory science – addressing the needs » to inform the public and stakeholders about regulatory science research needs and how stakeholders can engage with these regulatory science research needs. The webinar will take place on January 18th 2022 from 10.00 – 12.00 CET. Gaps exist in regulatory science that…

AFM-Téléthon to launch Medical Research Call for Proposals in Neuromuscular Disorders

Similar to its upcoming Scientific Call for Proposals 2022, the French Muscular Dystrophy Association (AFM-Téléthon) will soon launch its a Medical Research Call for Proposals in Neuromuscular Disorders. Open to both French and foreign teams, the objective of the call is to support medical research projects whose aim is to improve the care and management of patients,…