Rare Disease Day in Colombia
Colombia first took part in Rare Disease Day in 2009, supporting the campaign through the organisation of various events and activities, such as tree planting, public gatherings, and meetings on rare diseases.
For the past nine years, a highlight of the celebrations has been the annual gathering of patient organisations, people with rare diseases, government representatives and members of the press at the Parque de Los Novios in Bogotà. In 2017, 1500 people, including 25 patient organisations, met at the park to raise awareness of rare diseases, watch live performances, and fold one thousand paper cranes. The crane was chosen as the event’s mascot due to its associations with peace and good health; according to Japanese legend, folding a thousand paper cranes will make your greatest wish come true. People at the event and around the country took photos with their cranes for rare diseases, sharing them on social media with the hashtag #1000grullas (“#1000cranes”) and asking for more research and opportunities for people living with a rare disease.
Several symposiums were also held at universities throughout Colombia in February 2017, from Cali to Medellin, covering a wide range of issues from diagnosis to genetics.
You can also get involved! Do you know of any events not listed here? Email us at [email protected].