EJP RD

EJP RD HIGHLIGHTS

EJP RD General Assembly and Consortium meeting

14 -18 Sept 2020. The GA meeting will be held ONLINE and it will be the perfect occasion to bring together all EJP RD members and define the new roadmap for the next year. This year the program is very rich, broad, and tailored to the specific interests of its members.

EJP RD – Networking Support Scheme (NSS) call

Networking Support Scheme (NSS) call is OPEN! Health care professionals, researchers and patient advocacy organizations can apply to organize workshops or conferences on rare diseases and rare cancers. The focus of these events should be research results and innovative solutions. Open on a continuous basis. Collection date of 2 June is cancelled due to the COVID-19 outbreak. Next collection date is 1 Sept. 2020.

Toward Innovative Research Biobanks for Rare Diseases: Overcoming the Challenges

29-30 Oct 2020. This workshop will be ONLINE. Registration is OPEN, deadline is 28 Sept. Preliminary program is available. Targeted audience (max 30 participants): International research community, clinicians, medical specialists, RD biobank’s managers, healthcare professionals, and rare disease patients’ representatives. The workshop and registration are free of charge.

EJP RD – video

The NEW EJP RD video is available! What is the EJP RD? How EJP RD works? What kind of support EJP RD provides? How to contact EJP RD? Do you want to have all the answers? Then watch the video and subscribe to our NEW EJP RD YouTube channel!

EJP RD – SHORT GUIDE ON PATIENT PARTNERSHIPS IN RARE DISEASES RESEARCH PROJECTS

The guide aims to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisations, co-leading the way for systematic patient-centered research. Providing definition, examples, testimonials of patient partnerships, describing its benefits, preventing common pitfalls and accompanying applicants, this guide will support applicants to describe the role and added value of patient partnerships in research proposals.

EJP RD – ERN RD Training and Support Program – Research Training Workshops Call

31 August – 28 September. The goal of the workshops is to train researchers and clinicians affiliated to ERN-Full Members or – Affiliated Partners in relevant topics on rare diseases research . The workshops will be delivered as two-day events. Topics can be proposed by clinicians/investigators affiliated to ERN-institutions or EJP RD beneficiaries.

EJP RD Training. Quality assurance, variant interpretation and data management in the NGS diagnostic era

12-14 Oct 2020. The training course will be ONLINE. Registration is CLOSED. Preliminary program is available. Target audience (max 40 participants): Scientists, bio-informaticians, and clinicians with an interest in genomic technologies. The course and registration are free of charge.

EJP RD International Summer School on Rare Disease Registries and FAIRification of Data

28 Sept – 2 Oct 2020. The training course will be ONLINE. Final program is available. Registration is CLOSED. It will provide participants (30 max) with useful knowledge on “Rare Disease Registries” and “FAIRification of Data”. Course and registration are free of charge.