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Rare
Disease day 2018

On February 28th 2018, rareDIG played host to over 100 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 followed; misdiagnoses and diagnostic odysseys were 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.

 

The rareDIG committee would like to thank the speakers, attendees and supporters who made our first Rare Disease Day event possible!

Speakers

Ian Stedman

Ian Stedman

Patient

Dr. John Mitchell


Dr. John Mitchell

Clinician

Dr. Mousumi Bose

Dr. Mousumi Bose

Advocate

Dr. Brett Thombs

Dr. Brett Thombs

Researcher

Dr. Nada Jabado

Dr. Nada Jabado

Researcher

Media

I'm an adult...now what? | Natalie Cinman | McGill Rare Disease Day 2018
11:30

I'm an adult...now what? | Natalie Cinman | McGill Rare Disease Day 2018

Natalie Cinman is patient-advocate with Osteogensis Imperfecta, a rare genetic disease. On February 28th 2018, she spoke about the challenges she faced transitioning from pediatric to adult care. The Rare Disease Interest Group (rareDIG) is a medical-student run group at McGill University (Montreal, Canada). We aim to spread awareness of rare diseases among medical students in an effort to improve the care of people with rare diseases and reduce the diagnostic odyssey. This talk was generously supported by Soft Bones Canada (http://softbonescanada.ca/) www.raredigmcgill.com Facebook: www.facebook.com/raredig Twitter: @Mcgill_raredig Instagram: @raredig_mcgill
You can make the difference | Joseph Galli | McGill Rare Disease Day 2018
08:54

You can make the difference | Joseph Galli | McGill Rare Disease Day 2018

Joseph, co-founder of Loeys-Dietz Syndrome Foundation Canada, speaks about a model of patient-driven research.
RD research and the proper practice of medicine | Eric Shoubridge | McGill Rare Disease Day 2018
18:57

RD research and the proper practice of medicine | Eric Shoubridge | McGill Rare Disease Day 2018

Dr. Eric Shoubridge (PhD) is Professor and Chair of the Department of Human Genetics at McGill. Research in his laboratory focuses on the molecular genetics of mitochondrial disease. On February 28th 2018, he spoke about the importance of research in rare diseases which extends beyond the impact on people affected by the disease. The Rare Disease Interest Group (rareDIG) is a medical-student run group at McGill University (Montreal, Canada). We aim to spread awareness of rare diseases among medical students in an effort to improve the care of people with rare diseases and reduce the diagnostic odyssey. This talk was generously supported by Scleroderma Canada (http://www.scleroderma.ca/) www.raredigmcgill.com Facebook: www.facebook.com/raredig Twitter: @Mcgill_raredig Instagram: @raredig_mcgill
Loeys-Dietz Syndrome | Johane Gauthier-Galli | McGill Rare Disease Day 2018
04:05

Loeys-Dietz Syndrome | Johane Gauthier-Galli | McGill Rare Disease Day 2018

Johane Gauthier-Galli, patient and co-founder of Loeys-Dietz Syndrome Foundation Canada speaks about this rare genetic disease at rareDIG"s Rare Disease Day 2018
Digital Shortcuts for a Rare Disease Odyssey | Adrian Thorogood | McGill Rare Disease Day 2018
19:00

Digital Shortcuts for a Rare Disease Odyssey | Adrian Thorogood | McGill Rare Disease Day 2018

Adrian Thorogood (B.A.&Sc., B.C.L./LL.B.) is a lawyer (Ontario) and Academic Associate at the Centre of Genomics and Policy at McGill. He develops guidance and tools to help researchers manage consent, privacy and security, and data access oversight. On February 28th, 2018 he spoke about the infrastructures through which patient data is shared. The Rare Disease Interest Group (rareDIG) is a medical-student run group at McGill University (Montreal, Canada). We aim to spread awareness of rare diseases among medical students in an effort to improve the care of people with rare diseases and reduce the diagnostic odyssey. This talk was generously supported by Scleroderma Canada (http://www.scleroderma.ca/) www.raredigmcgill.com Facebook: www.facebook.com/raredig Twitter: @Mcgill_raredig Instagram: @raredig_mcgill

Gallery

Reviews

The diversity in stakeholders sharing their experiences with or working on rare diseases was much appreciated.

Very well done. I was impressed, informed and entertained! Congratulations to all the organizers and presenters.

Awe inspiring to see the students interested in learning more about RD

It was an amazing event, please keep up the good work! Looking forward to next year's edition!

The speakers were well chosen and represented all of the key facets of rare diseases of patient concerns, researchers, fundraisers and ethical and legal dimensions. The speakers were clearly very well prepared and rehearsed. It was a privilege to participate in this event.

The talks were all very informative and I definitely feel like I learnt a lot from each of the speakers. It was very powerful to have many of the talkers be people who are themselves afflicted with rare diseases and who could talk about their personal experience.

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