One of the main objectives of the events is to draw media coverage, as well as to raise awareness of rare diseases and their impact on patients’ lives amongst the general public and decision-makers.

At the events we will also be launching our report outlining recommendations for a strategy for rare diseases, cumulating a year and a half of work gathering evidence.

We encourage attendance from all with an interest in rare diseases including patients and families, patient organisations, clinicians and health professionals, researchers, members of the pharmaceutical industry, etc.

Don’t forget to send in your photos and/or videos, as well as your health inequality testimony.