NEWS

Duchenne Data Foundation successfully concludes third Duchenne Patient Academy

Duchenne Patient Academy (DPA) is a global patient advocacy training by the Duchenne Data Foundation to create a broader and deeper understanding of Duchenne and Becker Muscular Dystrophy (DMD and BMD). Over the course of 7 days, DPA engaged 120 patient representatives from 52 countries to explore new approaches and propose new frameworks for collaboration. Read more about Duchenne Data Foundation successfully concludes third Duchenne Patient Academy[…]

RDCA-DAP: Data Sharing and Analysis to Support Rare Disease Drug Development

The European infrastructure for translational medicine, EATRIS,  has invited the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) team to present as part of its webinar series, EATx, to introduce RDCA-DAP to the European academic and industry audience on January 21, 2021 from 5:00 p.m. – 6:30 p.m. CET. EJP RD Coordinator, Dr Daria Julkowska Read more about RDCA-DAP: Data Sharing and Analysis to Support Rare Disease Drug Development[…]

Academia and non-profit research organizations developing orphan medicines get a fee waiver by The European Medicine Agency

The European Medicine Agency (EMA), with the involvement of the European infrastructure for translational medicine (EATRIS), have published an article on November 23rd on the EMA’s support for academic innovation entitled Advancing development of medicines by academia and non-profit research organizations in the European Union. An important highlight that enhances the collaboration between EMA and Read more about Academia and non-profit research organizations developing orphan medicines get a fee waiver by The European Medicine Agency[…]

The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks

The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant to establish a structural framework in support of the research activities of the ERNs. ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact Read more about The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks[…]

Ring14 International: Call for research grant application 2021

Ring14 International has launched the 4th Call dedicated to developing research projects on the “Ring14” Syndrome and other diseases due to rearrangements of Chromosome 14 (Chromosome Ring 14) online. The Call for proposals intends to finance a researcher for a year with a salary of 50,000 euros. Funds should be available by the end of Read more about Ring14 International: Call for research grant application 2021[…]

ADVANCE Online Course

The European infrastructure for translational medicine (EATRIS) has announced the launch of the ADVANCE Online Course on December 1st. ADVANCE is a 30-month EU training project, supported by Erasmus Plus with the objective to develop a 3-stage blended learning programme to support early-career biomedical scientists in developing currently missing scientific knowledge, transversal skills and competences Read more about ADVANCE Online Course[…]

SHIP-MD : Virtual public meeting on paediatric medical device development

All stakeholders interested in paediatric medical device development are invited to a dynamic 3-day virtual public meeting developed and guided by a multi-stakeholder group including the Critical Path Institute (C-Path), Food and Drug Administration (FDA), AdvaMed, American Academy of Pediatrics (AAP), and leaders of pediatric health systems. The meeting will be held on the 9, Read more about SHIP-MD : Virtual public meeting on paediatric medical device development[…]

EMA’s Public stakeholder meeting: development and authorisation of safe and effective COVID-19 vaccines in the EU

The European Medicine Agency (EMA) will organise a public meeting on 11 December 2020 to inform European citizens about the EU regulatory processes for the approval of COVID-19 vaccines and the Agency’s role in their development, evaluation, approval and safety monitoring. The COVID-19 pandemic is an unprecedented global crisis, with devastating health, social and economic Read more about EMA’s Public stakeholder meeting: development and authorisation of safe and effective COVID-19 vaccines in the EU[…]

2nd TransplantChild workshop : Novel strategies in paediatric transplantation

The European Research Network TRANSPLANT-CHILD is organising the  2nd TransplantChild workshop on translational research: “Novel strategies in paediatric transplantation” which will take place on November 30th, 2020 online. The main aim of the course is addressing training in paediatric transplantation according to the holistic approach of the network, providing skills to perform a common and Read more about 2nd TransplantChild workshop : Novel strategies in paediatric transplantation[…]

The Executive Summary of the ECRD conference is now available

The Executive Summary of the 10th European Conference on Rare Diseases and Orphan Products held on 14 – 15 May 2020, is now available online. The interactive Executive Summary is a document compiling the key takeaways from the conference, highlights from each theme, key facts and figures on the event itself, full list of committee members, Read more about The Executive Summary of the ECRD conference is now available[…]