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Help with scleroderma research by joining a SPIN Patient Advisory Team!

  • | Sep 25, 2019

SPIN periodically seeks individuals with scleroderma to help with our new research projects. Please read the information below to learn more. If you think you might be interested and able to commit the time, continue to the next page to provide some brief information about yourself.

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SPIN at the 2019 Scleroderma Foundation Patient Education Conference in Chicago

  • | Jul 29, 2019

Last week, SPIN members had the pleasure of attending the Scleroderma Foundation’s annual Patient Education Conference in Chicago, where hundreds of people in the scleroderma community congregated to attend educational sessions led by leading scleroderma researchers and healthcare professionals.

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Watch SPIN Director Dr. Brett Thombs' Rare Disease Day Presentation

  • | Apr 01, 2019

On Rare Diseases Day in February, SPIN Director Dr. Brett Thombs spoke about some of the major challenges involved in rare disease research and how SPIN is working to address these at an event hosted by the Rare Disease Interest Group of the Medical Students’ Society of McGill University. Click below to watch the whole presentation!

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SPIN Cohort recruitment has started in Australia!

  • | Mar 13, 2019

The SPIN Cohort is expanding to Australia! We’re pleased to announce that St. Vincent's Hospital in Melbourne has joined SPIN as the newest clinical site for recruiting scleroderma patients for the SPIN Cohort.

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Recap of Rare Disease Day 2019

  • | Mar 07, 2019

On Rare Diseases Day last week, SPIN members were proud to spread the message about scleroderma research.

SPIN Renews its Mission on Rare Disease Day 2019

  • | Feb 27, 2019

On Rare Disease Day 2019, SPIN’s mission is just as pressing as when it was first conceived ten years ago, and this year’s theme of “Bridging health and social care” is particularly relevant to SPIN’s work. The online support programs that SPIN is developing will support people with scleroderma as they navigate the many problems that scleroderma presents in a day-to-day life, including medical, social, and psychological challenges.

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A warm welcome to the new SPIN-PACE Patient Advisory Team

  • | Dec 17, 2018

We are thrilled to announce the formation of a new Patient Advisory Team that will oversee the development of the SPIN Physical Activity Enhancement (PACE) Project. Alongside SPIN researchers and healthcare providers, these patient advocates will help develop an online program to help people living with scleroderma to stay physically active.

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Highlighting the contributions of the SPIN-SSLED Patient Advisory Team

  • | Dec 06, 2018

In today’s post, we would like to highlight the contributions of the SPIN-SSLED Patient Advisory Team, which consists of ten patients and patient advocates who generously volunteer their time to work on the Scleroderma Support group Leader EDucation (SSLED) Project.