Portuguese patient organisations have celebrated Rare Disease Day since 2008, organising a range of events over the years. Photo exhibitions, informative conferences, and rare disease award ceremonies have all helped to raise awareness. Previous campaigns have encouraged people living with a rare disease to submit photos and stories to share on social media and provided the opportunity for people living with a rare disease to visit laboratories to bring them closer to the research process.
Rare Disease Day 2020 saw the second edition of the event ‘Machodo-Joseph Disease: From the lab to society’, a rare disease documentary viewing followed by a debate attended by patient representatives and medical professionals and a science concert event in Coimbra.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].