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Rare Disease Day 2019

On February 28th 2019, rareDIG played host to students, researchers, physicians, patients and community members in honour of Rare Disease Day. Speakers discussed the many challenges faced by people with rare disease and the success stories that follow; misdiagnoses and diagnostic odysseys are met with empowerment and optimism. In recognizing a collective of individuals focused on rare disease, we took a large step forward in raising awareness among future health care professionals.

 

A night out in support of Rare Disease at McGill's picturesque Moyse Hall Theatre.

 

*Cocktail hour served up great conversation over food and drink - the company of important players in the rare disease space including the many affected by rare disease, advocates, future physicians and researchers.*

 

*TED-like talks take the night away - Five diverse perspectives on the present and future of rare disease.*

 

More than 80 countries take part annually in Rare Disease Day in support of the millions of affected individuals worldwide. rareDIG’s annual Rare Disease Day, held on February 28th, 2019 at McGill University celebrated the over 7,000 rare diseases that we know of, and the many we have yet to discover!

 

Thank you to all those who we part of this very special day.

 

Thank you to all our Volunteers!

The Opening Act

A Collaboration for Change

rareDIG collaborated with Osmosis to produce a special commencement address. Osmosis is a well established source of medical information and is well known to students world-wide. They are a very active member in the rare disease space and we honoured to have debuted our collaborative effort at

Rare Disease Day 2019!

The Rare Disease Patient

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 Speakers

Ian Stedman

Toronto’s Hospital for Sick Children (SickKids)
Patients

“Ian Stedman is an Ontario father who was diagnosed at age 32 with a rare genetic disorder called Muckle-Wells Syndrome. He travelled the long road that many patients with rare disorders travel and understands the struggles of the journey. At the time of his diagnosis, Ian was working as a lawyer in the area of public sector ethics and accountability. His advocacy work started to become all-consuming, so he made the decision to return to graduate school in order to transition his career more towards the health sector. Ian is now completing his PhD in law with a hope to be able to do work that focuses more directly on things that matter most to people living with rare and chronic conditions. Ian’s journey has led to volunteer as a legal member on the research ethics board at Toronto’s Hospital for Sick Children (SickKids) and he is also completing a Fellowship in Artificial Intelligence Law and Ethics at SickKids’ Centre for Computational Medicine."

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Topics: Dr. Google and the Standard of Care

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