Recap of Rare Disease Day 2019

by Claire Fedoruk | Mar 07, 2019

Rare Disease Day Photo Brett PresentationOn Rare Diseases Day last week, SPIN members were proud to spread the message about scleroderma research.

 SPIN Director Dr. Brett Thombs spoke to an audience of researchers, students, physicians, patients and other members of the rare disease community at an event hosted by the Rare Disease Interest Group of the Medical Students’ Society of McGill University. He explained some of the major challenges involved in rare disease research, and how SPIN is working to address these.

 SPIN trainees and research staff also attended the 2019 Canadian Rheumatology Association Annual Scientific Meeting in Montreal. There, they gave 10 poster presentations on different research projects, including SPIN-HAND, SPIN-SSLED, SPIN-PACE, and SPIN-CARE. One of our team members, Andrea Carboni Jiménez, was awarded best abstract by an undergraduate student for her work on caregiver burden in scleroderma. Her study found that caregivers of people with scleroderma report a higher burden than the caregivers of people with more common diseases, highlighting the need to develop scleroderma-specific support resources for caregivers. Congratulations, Andrea!

CRA Conference Photo 2019-02-28
At this year’s Canadian Rheumatology Association Conference, (left to right) SPIN trainee Sami Harb, SPIN Communications and Outreach Coordinator Claire Fedoruk, SPIN Research Assistant Lydia Tao, and SPIN Research Assistant Andrea
Carboni Jiménez.

Top photo: SPIN Director Dr. Brett Thombs speaking at a Rare Disease Day event by the Medical Students' Society of McGill.