EJP RD HIGHLIGHTS
EJP RD PRESENTING AT EMA’S Workshop on Support for Orphan Medicines Development
EJP RD will be presenting at The European Medicines Agency’s Workshop on Support for Orphan Medicines Development which will take place via broadcast on 30 November 2020.
EJP RD RESEARCH MOBILITY FELLOWSHIP CALL
1 October – 13 November. The call aims to financially support training for PhD students and medical doctors affiliated to ERNs to undertake short scientific visits fostering specialist research training outside their countries of residence and within one of the ERN host institutions. Applicants who will receive fellowships for Research Mobility should acquire at their host (secondment) institution new competences and knowledge related to their research on rare diseases and with benefit to their ERN.
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 – 12 October. 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.
This year’s largest event organised by the European Open Science Cloud Executive (EOSC) & Governing Boards with the support of the EOSC Secretariat project will go virtual on 19-22 October 2020 (mornings only). Registration is free of charge and open here until 13th October 2020. The event will analyse the progress of EOSC after two Read more about EOSC Governance Symposium 2020[…]
EJP RD will be presenting at The European Medicines Agency’s Workshop on Support for Orphan Medicines Development which will take place via broadcast on 30 November 2020. The goal of this event is to emphasise on an early medicine development and regulatory interactions. Existing tools such as orphan designation, protocol assistance and PRIME scheme will be Read more about EMA’s Workshop on Support for Orphan Medicines Development[…]
Pathways explain how the cells in our bodies work. Like a wiring diagram, pathways show the flow of interactions and reactions among molecules that perform all the functions of life. There are basic metabolic pathways, e.g. the metabolism of sugars, signaling pathways, like the development of the heart, and there are also pathways for diseases Read more about WikiPathways Training Course and User Guide[…]
The Big Data Steering Group set up by the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) has published its first workplan which sets actions to be delivered in 2020-21. The workplan aims to progress evolution to data-driven regulation through smart working, leveraging international collaboration with stakeholders and the use of remote Read more about Big Data Steering Group for 20-21[…]
The awards strive to recognise and put the spotlight on the exceptional accomplishments in the field of rare diseases. This includes the ever-growing contributions of patient advocacy groups, volunteers, scientists, companies, media, and policy makers towards alleviating the impact of rare diseases on people’s lives. Awards categories & criteria The 13 award categories, listed below, Read more about EURORDIS Black Pearl Awards 2021[…]
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[…]