The last day of February is Rare Disease Day. This year, that will be Thursday, February 28th, 2019.

There will be a lot of activity that day and for those wanting to participate, there are a lot of options.

Be a Friend

The official Rare Disease Day organization affiliated with Canada is www.rarediseaseday.org – which is a global organization originated by various European countries (via EURORDIS) as well as Canada (via CORD).

You can become a friend of the organization. Zeal Access is a ‘friend’ and it is a great way to be part of the community and show the world what country (and disease) you represent.

You can also see what other friends are present in your country.

Another great component of the Rare Disease Day organization is their calendar where you can post your own event.

Finally, it should be pointed out that this organization is the one that started this movement and they remain the key player. They have great graphics and hashtags to help you promote your event and organization on the 28th.

A great campaign by the Rare Disease Day organization is face painting. It started last year and due to popular demand, it is this year’s theme as well. Rare disease Canadians are encouraged to paint their faces on the 28th. Even the Zeal Team got involved with that last year (and we will again this year).

Also, look for face tattoos to appear at all Rare Disease Foundation events on the 28th.  It makes each event more interesting and creates some great photo opportunities.

Coming in a close second for influence is Rare Disease Day US by NORD (National Organization for Rare Disorders). They have less graphics and logos to share but since it is the US, it is a powerful force. This year, they will have a zebra theme with the hashtag #showyourstripes.

Events Across the Canada

Throughout the country, events will be occurring to promote rare disease research and raise awareness with local, provincial, and federal policy makers. Many buildings will be lit with specific colours to acknowledge various organizations [e.g., blue for CORD, orange for Rare Disease Foundation (RDF), etc].

On the political front, CORD will be hosting a breakfast reception at Queen’s Park in Toronto. Meanwhile, in Ottawa, RDF, along with CORD and Rare Disease Review will be hosting a flag raising ceremony in Ottawa. The flag raising will occur at 10:30 am with a special proclamation focused on rare disease day by Tom Kmiec, Conservative MP for Calgary-Shepherd. Also in attendance will be Francesco Sorbara, Liberal MP for Vaughan-Woodbridge, Jenny Kwan, NDP MP for Vancouver EastElizabeth May, Green Party Leader and MP for Saanich – Gulf Islands, as well as many key advocacy and biotech leaders. Believe it or not, there is currently no official definition of a rare disease in Canada. In 2015, CORD proposed a Rare Disease Strategy for the government. They are still waiting for a response. Hopefully, ceremonies like the one on Parliament Hill will spark some conversation about officially recognizing rare diseases in Canada.

RDF is also hosting many events across the country in which researchers and patients will share their data and/or stories. Events are planned for St. John, Montreal, Ottawa, Toronto, Whitehorse, Vancouver, and Victoria. And as the day gets closer, more fundraisers, galas, panel discussions, and presentations will likely get scheduled. For more information about these events, feel free to reach out to me at jim@zealaccess.ca.

Finally, numerous cities and towns will be making rare disease declarations and lighting up buildings on the 28th (e.g., blue lights for CORD, orange lights for RDF, etc).

Social Media

On social media, participants are encouraged to use the hashtags #RareDiseaseDay and #ShowYourRare on the 28th. And the more face painting images, the better. For those interesting in things south of the border, the U.S. is going with a more zebra-themed approach using the hashtag #showyourstripes.