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Posted by on Feb 25, 2018 in Bioethics, CRPS / RSD | 0 comments

RareDIG event = For everyone! (25.02.2018)

RareDIG event = For everyone! (25.02.2018)

Eight dedicated medical students at McGill University, here in Montréal, recently created the Rare Disease Interest Group (RareDIG) within the University. Their mission is:

“Equipping future physicians for the reality of rare diseases. One in 12 Canadians are affected by a rare disorder (Canadian Organization for Rare Disorders), thus a physician is likely to encounter patients with rare diseases. The MSS Rare Disease Interest Group (rareDIG) aims to bring rare diseases to the attention of medical students. Whereas a physician cannot possibly know all 7000 rare diseases (National Institutes of Health), this group aims to encourage medical students to develop an awareness and appreciation of the challenges patients with rare diseases and their families face. As part of this group, medical students will be afforded the opportunity to learn how to care for and advocate on behalf of their patients with a rare disease, how to connect patients and their families to support groups and how to critically consider the often-scarce literature regarding rare disease.”(1)

On a more personal note, because one of their members suffers from a rare disease, their aim is to “shed light on oft-ignored cadre of diseases”(2):

“A rare disease is defined as a condition that affects less than 1 in 2,000 people. However, when combined, the nearly 7,000 identified rare diseases affect tens of millions of people worldwide, including 1 in 12 Canadians. ‘We all likely know someone who suffers from a rare disease,’ says Jessie Kulaga-Yoskovitz, a second-year McGill medical student and the President and Founder of the McGill MSS Rare Disease Interest Group (rareDIG), one of the first student groups focused on this topic in Canada.”

And the RareDIG is already working hard to connect patients & families with medical students and the larger healthcare community! To mark international Rare Disease Day (3) on February 28th, they’re hosting a public event – and it looks absolutely fantastic. This is one of more than 365 activities planned – across 78 countries – to raise awareness of rare diseases and how they impact the lives of patients and their families. A full year of activities, all on one very special day. For a list of events around the world, sortable by country, visit: https://www.rarediseaseday.org/events/world.

If you’ll be in Montréal on February 28th, please consider attending the RareDIG event – I will be…
It will start off with a reception from 1800 to 1900, and then a series of talks from 1900 to 2100 – all for only $10! The speakers include 2 rare disease patients and 2 researchers. Natalie Cinman will share experiences with Osteogenesis imperfect, and Joanne Galli (and her husband Joseph) will discuss Loeys-Dietz Syndrome.

The two others speaking will be Eric Shoubridge, Chair of the Department of Human Genetics within the Faculty of Medicine at McGill University. His laboratory at the Montréal Neurological Institute (MNI) studies the molecular genetics of mitochondrial diseases, in affiliation with the Department of Human Genetics and Neurology of McGill University, as well as the Department of Neurosurgery.

One of the non-patient speakers – of particular interest to bioethics professionals – will be Adrian Thorogood from the Centre of Genomics and Policy (CGP; also at McGill University) as well as the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health (GA4GH).

All in all, this line-up of speakers is exceptional and I’m really looking forward to it. As of today, there are still tickets available. Please visit the RareDIG website for details & the registration link: https://www.facebook.com/rareDIG/

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(1) McGill Medical Student Society (MSS). Rare Disease Interest Group. Web: http://www.mcgillmed.com/interest_groups/mss-rare-disease-interest-group/

(2) Clement, Jason. Raising awareness of rare diseases. McGill in the Community. 20 Feb 2018. Web: http://community.mcgill.ca/raising-awareness-of-rare-diseases/

Raising awareness of rare diseases

(3) International Rare Disease Day is coordinated by the European Organisation for Rare Diseases (Eurordis); for more information, visit the Rare Disease Day website at: https://www.rarediseaseday.org/article/about-rare-disease-day

 

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