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…
The recently released report of the 2021 European Research and Innovation Days organised in June 2021 by the European Commission presents the main conclusion from the 21,000 participants and 200 high-level speakers: The report contains summaries and quotes from the event’s 70 online live sessions and workshops, as well as from over 200 consultations between…
We are glad to announce today (December 14th 2021) the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. The aim of the funding opportunity is to enable scientists in different…
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…
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,…
Based on the results of this year’s Téléthon fund-raising event, the French Muscular Dystrophy Association (AFM-Téléthon) will soon launch its annual Call for Proposals. The Scientific Call for Proposals 2022 is open to both French and foreign teams and aims to support research with a particular focus on therapeutic and technological projects applicable to several…
Following the successful implementation of three Joint Transnational Calls since 2019, EJP RD is glad to announce the upcoming launch on December 14th of the fourth EJP RD Joint Transnational Call (JTC) 2022, aimed at funding multilateral research projects on rare diseases under the EJP-COFUND action. The aim of the call is to enable scientists…
In the context of EJP RD’s ERN Workshops, a hybrid workshop on « contemporary outcome measures in neuromuscular diseases » aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice. The hybrid event (in-person on site and online by videoconference) will take place over two days on March 4th – 5th,…
In the context of EJP RD’s ERN Workshops, a face-to-face workshop on « Endocrine cancer: A challenge in adults and children » aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute. The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National…
Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects Date and Time: December 15th, 2021 from 15.00 – 16.00 CET. Organisers/Moderators : Franz Schaefer and Clémence Le Cornec Speakers: Spencer Gibson (University of Leicester), Guillaume Byk (DG-Santé – European Commission) and Antonio Cutillo (Joint Research Center) Description: This workshop will be the first of the…