A funded networking event « International Vasculitis Patient Conference » is being organised as a satellite hybrid event to the 20th International ANCA Vasculitis Workshop 2022. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the sixth round of funding in September 2021. The hybrid event will take place over two days from…
The Global Alliance for Patient Access has made available a policy paper on unmet needs in Neuromyelitis Optica Spectrum Disorders (NMOSD) in Europe, published in multiple languages. A rare autoimmune condition of the central nervous system, NMOSD causes deterioration to a person’s optic nerve and spinal cord. It affects over 10,000 people in Europe but…
Earlier this year, the Chan Zuckerberg Initiative (CZI) launched two Requests for Applications (RFA) for grant opportunities that will fund collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing our understanding of the fundamental science of rare diseases. The Networking Expo is a two-day ideation and matchmaking workshop specifically designed…
The Global Alliance for Global Health (GA4GH) is looking for feedback on its strategic approach via a Community Survey and eight live Town Hall meetings with members of the executive team. The Community Survey is open until May 13. The Town Hall meetings are being proposed in March and April, and are open to everyone. Every two years, GA4GH…
Rare Conversations invites you for the inaugural episode of the new Rare Conversations event series in 2022, aimed at powering the next decade of rare disease innovation in Europe. The first episode will be focused on game-changing opportunities for the R&D community to address existing challenges in rare diseases. The aim is to understand what is the basis…
In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled « Comprehensive gene profiling, molecular tumor board (MTB) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers » aimed at increasing physicians’ awareness on the possibilities of comprehensive genomic profiling in gene-guided planning of modern cancer treatment and addressing multidisciplinary aspects between specialists who are working…
The ERN Research Training Workshops funding opportunity is now open for applications until April 25th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be…
Drug development programmes in rare diseases have many challenges, some of which differ from those facing researchers working on common diseases, like the lack of clinical research experts and the scarcity of patients. Moreover, academic sponsors and investigators end up getting involved not only in the scientific aspects of the research but also having to…
The Innovative Health Initiative (IHI) is organising a series of live sessions on Innovative Medicines Initiatives (IMI) Impact, where key actors will explore the challenges and demonstrate how IMI contributes by engaging IHI/IMI stakeholders in a broader discussion on IMI’s impact, with this webinar focused on IMI’s impact on SMEs in health data management &…
The 16th Genomics of Rare Disease Conference is being organized a virtual event targeted towards professionals in genomics research and clinical care, and aims to discuss how genomic science and advanced technology can support research to improve clinical practice in rare diseases. The fully online conference will take place over two days on March 28th – 29th from 13.00 – 18.00 CET. Registration…