Rare Disease Day
Here’s something we never really thought we’d be a part of in this lifetime – Rare Disease Day. February 28th is a day we take to acknowledge rare diseases and the impact they have on people’s lives. We also thank and recognize the valiant health care workers, nurses, and doctor fighting these diseases. 2019 marks the twelfth international Rare Disease Day. On this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.
For us, rare disease day comes after an especially significant day – Cindy’s Stem Cell Transplant. A stem cell transplant by design saves a patients life. In Cindy’s case this is from a rare form of a fairly rare disease – CNS Lymphoma. Above all it is only through the work hospitals and research organizations are doing this is now a winnable fight. For instance as recently as 3 years ago, this disease had a much different prognosis. Above all we are forever grateful to everyone who has contributed to her treatment.
This year the theme of Rare Disease Day 2019 is ‘Bridging health and social care‘. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.
Canada’s Part
Patient organizations 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. In Toronto in 2017, the city’s 3D sign lit up in the colours of Rare Disease Day—blue, green, pink and purple—for the whole of 28 February!
2018 again saw a huge variety of events across Canada. For instance, cocktail receptions were held throughout Canada with researchers and parent speakers sharing their knowledge and experiences. This year’s annual Rare Disease Day Awards Gala organized by the Canadian Organization for Rare Disorders (CORD) took place in Ottawa. There were also some very innovative fundraising events such as a peel race and candy selling around St. Valentine’s Day.
If you’d like to read more on this years theme is please check out https://www.rarediseaseday.org/article/about-rare-disease-day. If you’re interested in the organization itself you can head over to https://www.rarediseaseday.org/ and read up. One thing we’d ask is that if you’re thinking of a financial donation, please hold on to that for now if you can. We have something in the works that will be more specific to Cindy and the organization and people who supported her.