IRDiRC members Lucia Monaco (Consortium Assembly Chair), Daria Julkowska, Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser, and Ritu Jain will be discussing IRDiRC at a global scale during the upcoming two-day online workshop entitled “Covering Rare Diseases” to be held on September 13th and 14th and organised by the National Press Foundation.
Registration is open here
The free workshop will bring together global experts to discuss topics including:
- The prevalence of rare diseases and how they are often misdiagnosed;
- How artificial intelligence and big data are being used to accelerate diagnosis and treatment of rare diseases;
- How regulators in the U.S. and the EU support the development of treatments through mechanisms such as the Orphan Drug Act;
- How patients and their families organize to prod government and industry to focus on their ailments;
- Whether advances in diagnosis and treatment will widen existing racial disparities in medical care and what can be done to improve inequities in treatment.
The workshop is open to journalists and others around the world.