The dates for the 2022 edition of the Innovation Bootcamp in Rare Diseases (IBRD2022), sponsored by Congress Care, have been announced. The event is targeted towards all professionals involved in the prevention, treatment and diagnosis of rare diseases and orphan drug research and development, including researchers, clinicians, pharma, policy makers and patient representatives. This in-person event will…
Scientify Research, a Swedish company providing an open, curated and structured research funding database that focuses on aggregating information on funding opportunities across several research areas, has published a curated list of grants and funding opportunities available in the field of rare diseases. The website also collates information about research funders, and users are allowed…
In the framework of the French Presidency of the Council of the European Union (PFUE 2022), and under the high patronage of the French Ministry of Higher Education, Research and Innovation (MESRI), Inserm (French National Institute of Health and Medical Research) is organising a scientific symposium on Rare Diseases. The hybrid conference (in-person for specially invited attendees…
The Dravet Syndrome Foundation Spain (FSD), a non-profit organisation that promotes, encourages, and connects the world’s leading research centers for Dravet syndrome and related diseases, is announcing its upcoming conferences taking place in 2022, whose registration is now open at www.dravetconference.com. These in-person events will take place in Madrid, Spain over three days from March 31st – April 2nd. 1. Dravet Syndrome…
Euronews has gathered a panel of experts, industry leaders and key players in Brussels to address the issue of how rare disease provision can be advanced in the European Union (EU) in a virtual debate entitled « Innovation in rare diseases: How can Europe be a global leader?« The virtual debate will take place on February 15th from 15.00 – 16.30…
The Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC) is establishing a Task Force on Drug Repurposing Guidebook to help developers (of all kinds) navigating the rare disease landscape and identifying specific tools and practices of relevance for repurposing projects. The creation of the Development Guidebook will focus on repurposing approaches, following the same successful methodology used…
The Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC) is establishing a Task Force to characterize specific commonalities amongst a large group of “disregarded” rare diseases, with the potential secondary aims to identify removable roadblocks that may foster future research and development. The PLUTO project aims at using an integrated database search approach to: identify and classify…
The International Rare Diseases Research Consortium (IRDiRC) has published the results of its COVID-19 survey in the Rare Disease and Orphan Drugs Journal. The ambitious goals set by IRDiRC by 2027 to fulfill the vision of providing diagnosis and treatments to rare diseases (RDs) patients within one year of coming to medical attention have been challenged by the COVID-19…
Following a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of several Member States, the United Nations (UN) General Assembly has formally adopted on December 16th 2021 with the consensus of all 193 UN Member States the UN Resolution on Addressing the Challenges of Persons Living with a Rare…
Rare Disease Ghana Initiative (RDGI), in partnership with Rare Diseases International (RDI), is organising the first African Summit on Rare Diseases with a view to promoting learning and exchange on the state of rare diseases in Africa. The Summit will bring together key stakeholders to discuss challenges and innovations shaping the rare disease landscape in…