EJP RD HIGHLIGHTS
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.
EJP RD – Rare diseases research (RDR) Challenges Call
The RDR Challenges call is NOW CLOSED! #4 different challenges have been identified: 1. Development of a non-invasive tool for measuring rare disease patient mobility in daily living; 2. Delivery system for intranasal administration of biological drugs to neonates; 3. Characterize Rare Bone Disorders (RBD) Mobility Challenges in Real World Setting; 4. Pre-clinical assay to detect instability of microsatellite repeat expansions.
EJP RD Internal Call for Proposals – Clinical Trials Methodology Demonstration Projects
The Clinical Trials Methodology Demonstration Projects Call is aimed to show the usability and capability of the innovative statistical methodologies for clinical trials in rare diseases, which have not been demonstrated on existing data for specific rare disease clinical trials yet. The call is now closed for submission of 1-pager letters of interest.
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: 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 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 OPEN, deadline has been extended to 15 August 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.
EJP RD Financed Workshops
The “Research Training Workshop” call is aimed at identifying workshop topics to train ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. Three workshops were recommended for funding.
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!
In the Innovative Medicine Initiative (IMI2) report regarding rare diseases recently published. In the report, beside the several relevant recommendations on different topics such as digital solutions, innovative technologies, and a more explicit value framework for orphan drugs, a list of common challenges, and a note about public private partnership. In addition, EJP RD as Read more about IMI2 JU Scientific Committee recommendations regarding rare diseases[…]
The European Research and Innovation Days will take place on 22, 23, and 24 September 2020. Research and innovation will be key to ensure a transition to a sustainable, inclusive, and resilient post-corona society. This year’s format will provide an opportunity to connect, take stock of research and innovation achievements in the global response to Read more about European Research and Innovation Days[…]
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[…]
VASCERN, The European Reference Network for Rare Multisystemic Vascular Diseases, has partnered with the Marfan Foundation to co-lead the first E3 International Summit: Educating, Empowering, and Enriching Our Community! The online event will provide unique access to presentations and live question and answer sessions (in 6 languages) on Marfan, Loeys-Dietz, vascular Ehlers-Danlos syndrome (vEDS), Stickler syndrome, and related conditions. Read more about E3 International Summit[…]
Update to rare disease database allows researchers and clinicians to input, interpret and share all types of genomic variants in all regions of the genome A new update was launched by researchers at the Wellcome Sanger Institute and their collaborators at Cambridge University Hospitals NHS Foundation Trust (CUH), which runs Addenbrooke’s and the Rosie maternity. Read more about Update to DECIPHER brings power to clinical genomics[…]
Paediatric Devices survey. Your help is needed! Share your experiences of using devices to take medicines
The European Paediatric Formulation Initiative (EuPFI) works to improve the preparation of better and safer medicines for children. One area they are interested in is the “gadgets” or devices (e.g. measuring spoons, dosing cups, inhalers) that are used to help patients take their medicines. It is important that these devices are used properly to make sure the Read more about Paediatric Devices survey. Your help is needed! Share your experiences of using devices to take medicines[…]
ECSEL JU, the joint undertaking for electronic components and systems, has launched a Call for proposals on decentralised clinical trials that would complement the work of IMI’s Trials@Home project. In a conventional clinical trial, patients have to make regular trips to the clinic for check-ups to monitor their condition. IMI’s Trials@Home project was launched in Read more about ECSEL JU launches Call for proposals on decentralised clinical trials[…]
ERA-LEARN Report on Inclusiveness in European R&I Partnership Programmes has been released. This report presents the results of an ERA-LEARN survey on inclusiveness targeted at H2020 ERA-NET Cofund and EJP Cofund Programme coordinators. The goal of the survey was to collect information on measures introduced by H2020 ERA-NET Cofund and EJP Cofund Programmes, in order Read more about ERA-LEARN report on inclusiveness[…]
The European Commission has initiated a study that aims to examine in which manners the processing of personal health data is governed across the European Union (EU) and how this might affect the cross-border exchange of health data in the EU in light of the GDPR. The study is executed by the EUHealthSupport consortium. As part Read more about Stakeholder Survey EUHealthSupport[…]
The EMA has decided to waive all fees for scientific advice for academic researchers developing orphan medicines, to further encourage the development of treatments for rare diseases. The academic sector plays an important role in the development of innovative medicines. Their scientific research is often at the source of novel methodologies and innovative medicines with Read more about Academia developing medicines for rare diseases to receive free EMA scientific advice[…]