Rare Disease Day 2020
Rare Disease Day takes place on the last day of February each year.The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Save Your Skin Foundation advocates for patients touched by rare skin-cell diseases such as ocular melanoma (OM), merkel cell carcinoma (MCC), and metastatic basal cell (BCC) or squamous cell (SCC) carcinomas. Though more than 80,000 cases of skin cancer are diagnosed in Canada per year (which is more than breast, lung, prostate, and colon cancers combined), the most dangerous forms of skin cancer are also the least common – melanoma and rare melanoma sub-types such as OM, as well as acral and mucosal melanomas, MCC, BCC and SCC if they metastasize, are very serious concerns for Canadians
Patient organisations in Canada have engaged in Rare Disease Day since its first year in 2008, arranging gala dinners and exchanges between researchers and patients, as well as regional events across Canada. To raise awareness in Toronto in 2017, the city’s 3D sign was lit up in the colours of Rare Disease Day—blue, green, pink and purple—for the whole of 28 February!
2019 again saw a huge variety of events across Canada. Cocktail receptions were held throughout Canada with researchers and parent speakers sharing their knowledge and experiences as well as a breakfast for the general public to meet with members of Canadian Parliament. There were also some very innovative fundraising events such as a charity stationary bike ride dedicated to burning calories and raising funds.
Click the link below to learn more about Rare Disease Day: