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.…
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.…
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…
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…
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…
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…
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…
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…
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…
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,…