NEWS

Update to DECIPHER brings power to clinical genomics

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 launches Call for proposals on decentralised clinical trials

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

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[…]

Academia developing medicines for rare diseases to receive free EMA scientific advice

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[…]

FDA new grant funding opportunity

The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for fiscal years (FY) 2021 – FY 2022 to support innovative and efficient clinical trials for rare diseases and conditions. These studies are intended to provide acceptable data to the FDA that will substantially contribute to Read more about FDA new grant funding opportunity[…]

Virtual coffee with patient organisations and Share4Rare

World Duchenne Organization is involved in Share4Rare, a platform to boost rare disease research and recently, a new and improved role was introduced to the platform for patient organisations (POs). To share this important update and engage with rare disease POs, there will be a virtual meeting on a webinar for Patient Organisations in Rare Read more about Virtual coffee with patient organisations and Share4Rare[…]

European Research and Innovation Days

 European Research and Innovation Days (22 – 24 Sept 2020) is the European Commission’s annual flagship event, bringing together policymakers, researchers, entrepreneurs and citizens to debate and shape the future of research and innovation in Europe and beyond. With our societies gradually lifting their lockdowns and recovery plans taking shape, we must now ensure that Read more about European Research and Innovation Days[…]

European Biotech Week

 European Biotech Week: Celebrating Innovation The European Biotech Week established itself as a week of celebrations of science and biotech. This year, #biotechweek will be from 28 September to 4 October 2020,  start planning your #biotech event and register it with #EuropeanBiotechWeek. It can be anything, from a science cafe to a seminar, an artistic performance, Read more about European Biotech Week[…]