Covering Rare Diseases – National Press Foundation

The National Press Foundation is organising a two-day online workshop entitled “Covering Rare Diseases”. The workshop will take place on September 13th-14th.

EJP RD and IRDiRC Scientific Secretariat Coordinator Daria Julkowska along with other IRDiRC members Lucia Monaco (IRDiRC Consortium Assembly Chair), Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser and Ritu Jain will be discussing IRDiRC at a global scale.

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.