RareDIG 2019 (03.03.2019)
A few days ago, on February 28th, I attended a special event for international Rare Disease Day(1). The goal of this day is to raise awareness of all rare diseases, including mine; Complex Regional Pain Syndrome (CRPS). Often still referred to as Reflex Sympathetic Dystrophy (RSD), its former name.
This special event was organized by a student society group within McGill University‘s faculty of medicine; the Rare Disease Interest Group, called RareDIG(2). Their inaugural (first) event for Rare Disease Day was last year, and I was there as well. Read RareDIG event = For everyone! (2018) for information about that event.
RareDIG’s mission is “Equipping future physicians for the reality of rare diseases”(3), and one of the ways they do this is through these annual events – which are geared to an audience of medical students.
The format is similar to TedTalk events, with several different speakers; a mix of rare disease patients – or parents – and researchers. This year the line-up was particularly interesting to me, because someone I know was presenting. Someone I met at a bioethics conference. So once again my worlds collided; as someone whose field is bioethics, and now finds herself a rare disease & chronic pain patient.
To entice you to attend next year’s RareDig event, here are some of the photos I took at this year’s edition. Hope to see you there next year! If you scroll down to the last of the photos, you’ll find a surprise… February 28th this year was the start of week 2 of yet another festival in Montréal: MONTRÉAL EN LUMIÈRE. “Lumière” is “light”, so there was a lot of cool multicoloured lighting at the outdoor site. So after the RareDIG talks, I took a walk through the festival area, with its zip line, illuminated tunnel-like ‘urban slide’, and even a ferris wheel. They’d set out to create an ‘illuminated urban space’, taking into account our below-zero temperatures. There were plenty of urban fire pits, and warming stations, even a dance chalet/tent! And, because we Montréalers are known to be foodies, there were some really interesting looking food options there – from food trucks to temporary restaurants set up in shipping containers!
(1) The European Organisation for Rare Diseases (Eurodis). “What is a rare disease?” Online. Accessed 28 Feb 2019. Web: https://www.rarediseaseday.org/article/what-is-a-rare-disease
(2) McGill Medical Student Society (MSS). Rare Disease Interest Group. Web: http://www.mcgillmed.com/interest_groups/mss-rare-disease-interest-group/
(3) Clement, Jason. Raising awareness of rare diseases. McGill in the Community. 20 Feb 2018. Web: http://community.mcgill.ca/raising-awareness-of-rare-diseases/
(4) MONTRÉAL EN LUMIÈRE. Web: https://www.montrealenlumiere.com/