The Rare Disease Day campaign started in Chile in 2012 and since then art has played a huge role. Highlights include the use of self-portraits of children living with a rare disease to reach out to policy makers for better rare disease legislation and the #1000grullas (#1000cranes) campaign in 2017. According to Japanese legend, cranes represent peace and good health, and folding a thousand paper cranes will make your greatest wish come true. People around the country took photos with their cranes for rare diseases and shared them on social media.
The Rare Disease Day 2020 celebrations in Chile included a ‘Play of Light’ memorial remembering those with rare diseases. There was a national book launch of ‘Rare Diseases in Chile’ and a Press Point outside the Chilean Government Place to raise awareness as well as showcasing and spreading important work done by the Federation (FENPOF)
You can also get involved! Do you know of any events not listed here? Email us at [email protected].
The Chilean Federation of Uncommon Diseases (FENPOF) comprises leaders of rare disease associations that seek to create awareness and promote… Continue reading Conversations for the month of rare diseases