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.
Duchenne Muscular Dystrophy is a degenerative genetic condition which causes weakness and eventual loss of use in muscles of affected boys because of the absence of the dystrophin protein. September 7 is World Duchenne Awareness Day. On this day World Duchenne Organization raises awareness for Duchenne and Becker muscular dystrophy around the globe. Every year, Read more about Duchenne Awareness Day – Sept 7[…]
The ICCBH biennial conference is firmly established on the international meeting calendar and regularly attracts audiences in excess of 600 delegates to hear about and discuss the latest research into paediatric bone disorders. This year, in addition, ICCBH will organise a virtual meeting on bone fragility disorders on the 18-20 November 2020. The Virtual Forum Read more about ICCBH Virtual Forum – Bone Fragility Disorders in Children[…]
The online science exhibition will take place online between 22 and 24 September 2020 and is part of the European Research & Innovation Days. Slowing down global warming, improving our cities, preventing hunger and drought, fighting cancer… It’s all part of the topics that schools, youth, citizens and stakeholders will discover through Science is Wonderful!, a Read more about European Research & Innovation Days: Science is Wonderful! 2020[…]
The FAIRplus Fellowship Programme is a comprehensive training programme in FAIR data management. The programme will run for a period of approximately 8 months, starting in April 2021 and will guide its fellows through a series of modules combining online learning, ‘training on the job’ and short face-to-face meetings. After completing the programme, the fellows will Read more about FAIRplus: Fellowship Programme[…]
The EJP RD is glad to announce its second General Assembly (GA) and Consortium meeting that will take place from 14 to 18 September 2020. Due to Covid-19, the 2020 GA meeting will be held online. The GA meeting will be the perfect occasion to bring together all EJP RD members to have an open discussion on the work Read more about EJP RD General Assembly and Consortium meeting[…]
The event organized by the Swiss Institute of Bioinformatics (SIB) will be held on 22 September from 1 pm to 5 pm and it will be online. neXtProt is a platform developed at SIB that helps researchers answer questions relevant to human proteins. It provides a comprehensive set of high quality, fully traceable and standardized Read more about Swiss Institute of Bioinformatics (SIB): A guided tour through neXtProt streamed[…]
EMA and the Heads of Medicines Agencies (HMA) have developed a joint strategy for the next five years that is released for a two-month public consultation. The draft strategy details how the European medicines agencies’ network can continue to enable the supply of safe and effective medicines that meet patients’ needs in the face of challenges posed by Read more about EMA and HMA: Launch of public consultation on joint network strategy to 2025[…]
Interested in discovering the landscape of Translational Medicine? Learn from scientists in academia, industry and regulatory agencies and join the 2020 TMex winter school! EATRIS has organized 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 Read more about EATRIS: Translational Medicine Explained (TMex) digital course[…]
Following the success of the past Biohackathons (2018, 2019), and building on the Biohackathons organised by National Bioscience Database Center (NBDC) and Database Center for Life Science (DBCLS), ELIXIR is running Biohackathon Europe 2020 virtually this year. The hope is to build on the previous success and encourage more ELIXIR and non-ELIXIR participants to take Read more about ELIXIR: 3rd Biohackathon Europe is going virtually[…]
The Spanish National Bioinformatics Institute (INB/ELIXIR-ES) and the Barcelona Supercomputing Center (BSC) organize 19th European Conference on Computational Biology (ECCB2020), this year the motto is Planetary Health and Biodiversity. The ECCB2020 is the main computational biology and bioinformatics conference this year in Europe and will take place from August 31st until September 8th, 2020. Due to the Read more about INB/ELIXIR-ES & BSC: 19th European Conference on Computational Biology[…]