The Rare Disease Moonshot coalition encourages the rare disease research community to seize the opportunity presented by the Innovative Health Initiative’s call for proposal on Biomarkers, in alignment with the Research Needs Recommendations on Diagnosis In line with its mission of facilitating public private collaborations to address rare disease research “white spots”, the members of […]
Now open: The Public Consultation on the Strategic Research & Innovation Agenda of the future European Rare Diseases Partnership
Under Horizon Europe, the European Commission together with member states and associated countries decided to implement the Rare Diseases Partnership which brings a unique vision that aims at leaving no one behind by supporting robust patient need-led research, by utilising and maximising the power of health and research data, by engaging and coordinating regional, national, […]
Pre-announcement of Joint Transnational Call for proposals “Healthcare of the Future”
The European Partnership on transforming health and care systems (THCS), a Cofund action under the Horizon Europe Programme designed to support coordinated national and regional research and innovation programmes along with capacity building, networking, dissemination and other key activities to support health and care systems transformation, will launch its first Joint Transnational Call (entitled “Healthcare […]
Mark your calendars for WODC USA!
Only 8 days to go until the World Orphan Drug Congress USA 2024 in Boston (MA, USA, date: April 23-25). The WODC USA presents a golden opportunity to showcase the impactful work we’re doing and explore how collaborative efforts are shaping the future of rare disease research. Reserve your spot at the globally defining event […]
Rare disease network to help solve the health system’s hardest cases (PRESS RELEASE)
A new network of Western Australian and international rare disease experts is being formed to develop precision medicines for the trickiest – and sometimes undiagnosed – cases across our hospital system. Affecting around 500,000 children in Australia, rare diseases are the biggest killer of children in developed countries with 95% of the approximately 7,000 known rare […]
World Orphan Drug Congress USA 2024
The World Orphan Drug Congress USA is the defining event for the rare disease and orphan drug space globally. Widely regarded as the most important event for all rare disease stakeholders to attend, we are yet again bringing together top thought leaders from around the globe for our 2024 edition with even bigger ambitions to […]
Rare Disease Day 2024: What IRDiRC member organizations are up to?
Join us in spreading awareness this Rare Disease Day.The International Rare Diseases Research Consortium (IRDiRC) is bringing together the efforts of member organizations. Check out this collaborative post showcasing their impactful contributions towards rare disease research this Rare Disease Day. Alexion AstraZeneca Rare Disease This year, to celebrate the Rare Disease Day, Alexion is hosting […]
Just two months until application submission – FDA Office of Orphan Products Development Natural History Studies grant funding opportunity
The grant application submission deadline is coming up in just 2 months! The application submission deadline for this grant funding opportunity is February 13, 2024. Efficient and Innovative Natural History Studies Addressing Unmet Needs in Rare Diseases (R01) The purpose of this grant is to support efficient and innovative natural history studies that advance medical product development in rare […]
Announcement of upcoming FDA Office of Orphan Products Development Natural History Studies 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 year (FY) 2024 to support natural history studies for rare diseases and conditions. This funding opportunity is intended to support prospective or retrospective, efficient, and innovative natural history studies with a focus on collaborative […]
Sanofi Rare Disease Registries
Rare disease research presents unique challenges due to the small size of the populations of people living with these conditions. Collecting and curating large study cohorts in rare diseases presents a real problem, which can limit understanding of the clinical spectrum of disease. The SANOFI Rare Disease Registries represent more than 30 years of real-world […]