EJP RD HIGHLIGHTS
EJP RD – Rare diseases research (RDR) Challenges Call
The RDR Challenges call is OPEN! #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 – 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 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.
EJP RD Training. Implementing Biomedical Research Projects
11 – 14 May 2020. This workshop will be ONLINE, 14:00 – 17:30 each day. Registration is closed. Preliminary program – Virtual version – is available. Targeted audience: Researchers, clinicians, and biobankers. 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 October 2020. Istanbul, Turkey. Registration is OPEN, deadline is 20 July. Preliminary program is available. Target audience: Scientists, bio-informaticians, and clinicians with an interest in genomic technologies. The course and registration are free of charge.
EJP RD Training. Strategies to foster solutions of undiagnosed rare disease cases
27 – 29 April 2020. The training course will be ONLINE. Final program – Virtual version – is available. Registration is closed. It will provide participants (30 max) with useful examples for the resolution of undiagnosed cases. It is 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!
Latest news
‘Journey of Hope’
‘Journey of Hope’ is a short film offering a glimpse in to the lives of families where children have received a rare genomic diagnosis. In a world where labels and diagnosis are often framed negatively, this film highlights the reality of both the search for a diagnosis and the impact of the diagnostic moment. Above Read more about ‘Journey of Hope’[…]
EJP RD at the ECRD Conference
EJP RD is participating at the ECRD online conference that takes place today and tomorrow. In particular, tomorrow our coordinator, Dr. Daria Julkowska, will be one of the speakers presenting during SESSION 0503: “From Research to Access: Is a European Collaborative Approach Possible?” which is part of the” THEME 5 ACHIEVING THE TRIPLE AS BY 2030: Read more about EJP RD at the ECRD Conference[…]
Covid-19 Global Response – Communication Toolkit
On 4 May, the European Union joined forces with global partners to kick-start the Coronavirus Global Response, a worldwide pledging effort to raise €7.5 billion of funding to rapidly develop and deploy universally available and affordable diagnostics, treatments, and vaccines against the Covid-19. The opening event already raised €7.4 billion, including a significant contribution of Read more about Covid-19 Global Response – Communication Toolkit[…]
GA4GH 8th Plenary is going virtual!
GA4GH 8th Plenary will now be completely virtual, save the dates: September 29 – 30 2020. The 8th Plenary will bring together organizations and stakeholders from the genomics and health community for two days of keynotes, talks, updates, and workshops that will focus on advancing development work for the immediate data sharing needs of the community. Stay tuned for more details, Read more about GA4GH 8th Plenary is going virtual![…]
ERN TRANSPLANT-CHILD PATIENT’S GUIDE
ERN TransplantChild gives some important recommendations for transplanted patients and their families to take care of their health after this complex procedure. The guide is common for all types of transplants and includes different aspects of the post-transplantation process such as medication, rejection, infections, emotions and some frequently asked questions. The Patient’s Guide is in English, Read more about ERN TRANSPLANT-CHILD PATIENT’S GUIDE[…]
GA4GH: Regulatory and Ethics Perspective on COVID-19 Data Sharing
Efficient international collaboration and data sharing, two key components in the advancement of genomic medicine and human health, are proving essential for effectively responding to the global COVID-19 pandemic. The Global Alliance for Genomics and Health is focused on developing standards and guidance for responsibly sharing human genomic and related health data. Because of this, the Read more about GA4GH: Regulatory and Ethics Perspective on COVID-19 Data Sharing[…]
Coronavirus: Commission issues guidance to mitigate clinical trial disruption in the EU
The Commission has published guidance to ensure that clinical trials can continue taking place in the EU during the COVID-19 pandemic. The aim is to mitigate the disruption of clinical research in Europe and therefore the negative effects of the pandemic, without compromising on quality and safety. These recommendations are an important part of the overall Read more about Coronavirus: Commission issues guidance to mitigate clinical trial disruption in the EU[…]
ELIXIR All Hands 2020
The sixth ELIXIR All Hands meeting will take place virtually 8 -10 June 2020. The meeting brings together members of the ELIXIR community from across the ELIXIR Nodes, and collaborators from partner organisations, in order to review ELIXIR’s achievements and activities so far and discuss plans for the future. Participants from ELIXIR Nodes and invited Read more about ELIXIR All Hands 2020[…]
Latest progress on Horizon Europe’s Implementation Strategy
The rules and simplification measures put in place for Horizon 2020 were widely acknowledged by stakeholders as a big step towards a more attractive and easier to use programme. Based on this experience, work has been ongoing on Horizon Europe’s Implementation Strategy to set out how the programme will be managed in practice to achieve its ambitious Read more about Latest progress on Horizon Europe’s Implementation Strategy[…]
EJP RD in the EU Health Newsletter
In the EU Health Newsletter released today, there is a focus on the EJP RD as “an opportunity for the ERNs to leverage on research”. The EJP RD is honored and thankful for this opportunity, our commitment on overcoming fragmentation on rare disease research as well as on strengthening the collaboration with the European Reference Read more about EJP RD in the EU Health Newsletter[…]