An article featuring an interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases (EJP RD), has been published in ALS News Today.
The EJP RD initiative based in Paris was implemented in January 2019 to boost research in the field of rare diseases. Involving at least 130 entities from 35 countries, including hospitals, patient advocacy groups, universities and funding organisations, the EJP RD is overseen by the French National Institute of Health and Medical Research (INSERM) and according to Daria Julkowska, has two main goals:
- ensure that any patient with a rare disease can receive “a diagnosis within a maximum of one year, or be integrated into the research pipeline” and
- develop 1,000 new therapies for rare diseases within the next eight years