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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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Clinician's Corner: Helping a patient with a rare disease
11:35
Osmosis from Elsevier

Clinician's Corner: Helping a patient with a rare disease

Dr. Rishi Desai, Osmosis's Chief Medical Officer, goes over his best tips on how you can help a patient with a rare disease. Created in collaboration with the Rare Disease Interest Group at McGill University. Find our full video library only on Osmosis: http://osms.it/more. Join millions of current and future clinicians who learn by Osmosis, along with hundreds of universities around the world who partner with Osmosis from Elseiver to make medical and health education more engaging and efficient. We have unparalleled tools and materials to prepare you for success in school, on your board exams, and as a future clinician. Sign up for a free trial at http://osms.it/more. If you're interested in exploring an institutional partnership, visit osmosis.org/educators to request a personalized demo. Follow us on social: Facebook: http://osms.it/facebook Twitter: http://osms.it/twitter Instagram for med: http://osms.it/instagram Instagram for nursing: https://osms.it/ignursing TikTok: https://osms.it/tiktok Linkedin: https://osms.it/linkedin Our Vision: Everyone who cares for someone will learn by Osmosis. Our Mission: To empower the world’s clinicians and caregivers with the best learning experience possible. Learn more here: http://osms.it/mission Medical disclaimer: Osmosis from Elsevier does not provide medical advice. Osmosis from Elsevier and the content available on the Osmosis from Elsevier properties (Osmosis.org, YouTube, and other channels) do not provide a diagnosis or other recommendation for treatment and are not a substitute for the professional judgment of a healthcare professional in diagnosis and treatment of any person or animal. The determination of the need for medical services and the types of healthcare to be provided to a patient are decisions that should be made only by a physician or other licensed healthcare provider. Always seek the advice of a physician or other qualified healthcare professional with any questions you have regarding a medical condition. © 2024 Elsevier. All rights reserved.

Reviews

The range in expertise and experiences - they complimented each other nicely

Inga

I really enjoyed the talking and mingling and getting to interact with the speakers (as well as the food!) before the talks began.

Jennifer

Awesome variety of speakers, food was amazing, the whole atmosphere was really cool.

Gordie

I liked the variety of speaker backgrounds! And the pre talk snacks :)

Taylor

I liked the patient and caregiver's personal stories; but also researcher's stories as well.

Marion
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