DEADLINE EXTENDED: 23 NOVEMBER 2021 Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?If yes, this paediatric…
On October 6th, 2021, the European Commission (EC) opened a new funding call titled “Tackling diseases (Two Stage – 2022) (HORIZON-HLTH-2022-DISEASE-06-two-stage)” in the context of the Horizon Europe Framework Programme on the development of new effective therapies for rare diseases. Since the EC recommends that proposals try and take stock of the FAIR guidance and other models…
EJP RD is co-organising the « Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward » conference in cooperation with Alexion, EURORDIS, EUCOPE, and EuropaBio. The conference is targeted towards representatives of the different communities active in rare diseases: patients, researchers, clinicians, regulators, investors, payers, and industry. The fully online conference will take place on November 9, 2021 from 14.00 – 18.00 CET.…
The deadline for the EJP RD ERN Research Training Workshops funding opportunity has been extended to October 22nd. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover,…
Biogen has collaborated with SMA Europe to develop a tool called the Spinal Muscular Atrophy (SMA) Policy and Access Tracker, which offers an in-depth assessment of how 23 European countries are performing in terms of access to SMA treatment, care and supporting policies, identifies the major areas for improvement, and provides policy recommendations to tackle…
EJP RD is co-organising a series of 3 workshops dedicated to drug repurposing for rare disease. Registration links will be provided soon. Registration is free but places are limited. This first session, which will be held on October 21st, is entitled “An introduction to drug repurposing for rare diseases – the benefits, the process and…
EJP RD held its annual General Assembly and Consortium Meeting on 14-16 September 2021. The event gathered over 400 registered participants, with 90 to 120 participants per session. The satisfaction survey showed that 92% of participants were satisfied/very satisfied overall with the meeting. Collaboration, Innovation, Data, Funding & Empowerment are key for the European Joint…
The ERN Research Training Workshops funding opportunity is now open for applications until October 4th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops…
The second run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the Foundation for Rare Diseases will start on October 4th. Registrations are free and open at this link. 1800 learners from 117 countries (40% outside Europe) joined…
The first ever European SCN8A & SCN2A Conference takes place at the University of Bonn (10th-11th September 2021) with a full virtual alternative. This event was organized in the context of the EJP RD Networking Support Scheme. Register here to attend in person Register here to attend online Speakers, agenda, and more information here: https://scn8a.eu/…