Dr. Brett Thombs at the Scleroderma Society of Ontario's Shout it from the Rooftop Event

​ | Oct 01, 2019

Dr. Brett Thombs was honoured to speak at the Scleroderma Society of Ontario's Shout it from the Rooftop event last week.

 

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.

 

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.

 

 

 

 

A big thank you to everyone who attended the 2019 Scleroderma Walks!

 | Jul 26, 2019

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SPIN at Sclérodermie Québec's Support Group Leader Day

 | May 06, 2019

Last weekend, Dr. Brett Thombs, Director of SPIN, and Marie-Eve Carrier, SPIN Coordinator, had the pleasure of speaking at Sclérodermie Québec's Support Group Leader Day.

 

 

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!

 

 

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.

 

 

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.

 

Funding received for clinical trial of the SPIN-SSLED Program

 | Feb 07, 2019

We're excited to announce that SPIN has received funding from the Canadian Institutes of Health Research (CIHR) to run a clinical trial of the SPIN-SSLED Program, a training course for scleroderma support group leaders.

 

 

Year-end thank you to the Canadian scleroderma community

 | Dec 21, 2018

As 2018 draws to a close, we would like to express our deepest gratitude to all of SPIN’s partner organizations who have donated their hard-earned funds to our projects over the past year.

 

 

 

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.

 

 

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.

 

 

SPIN at the Scleroderma Society of Ontario Patient Events

 | Dec 03, 2018

SPIN at the London Ontario Patient Forum on November 11th and the Ottawa Information Session on November 27th.

 

 

 

A big thank you to the Scleroderma Society of Nova Scotia!

 | Nov 29, 2018

The snapshot highlights the importance of SPIN-HAND, our online exercise program that was first tested by SPIN Cohort participants and will be made available to the public in less than a month!

 

 

 

Thank you to the Scleroderma Association of Saskatchewan!

 | Oc 24, 2018

We are thrilled to announce that the Scleroderma Association of Saskatchewan has made a generous donation to SPIN-SHARE. This donation will go towards the dissemination of SPIN’s first online toolkit to support hand limitations in scleroderma, which will be available to the public in Spring 2019.

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SPIN Recap of the 2018 Scleroderma Canada National Conference

 | Oct 10, 2018

At the National Scleroderma Conference in Calgary this September, we were excited to announce the launch of SPIN’s online platform for sharing our scleroderma support programs: SPIN-SHARE.

 

 

Follow SPIN on Social Media!

 | Jun 07, 2018

In honour of Scleroderma Awareness Month, SPIN is launching social media! Follow us on Facebook and Twitter for updates on our research activities, photos from scleroderma-related events, and interviews with patient advocates, rheumatologists, and other members of the community.

 

 

SPIN Research Suggestions

 | Apr 29, 2019

With many projects and toolkits underway, SPIN would love to hear your suggestions for which research questions we should address next!

 

 

 

The SPIN-SHARE project: Making SPIN’s online support programs accessible for free

 | Mar 20, 2018

From its very beginnings, SPIN has always prioritised the accessibility and distribution of our online supportive toolkits. We are therefore very proud to announce the creation of the SPIN-SHARE project, which will spearhead SPIN’s outreach activities and distribution of our programs. During the 5th Systemic Sclerosis World Congress, which was held in Bordeaux, France from February 15th to 17th 2018, we held a meeting to launch SPIN-SHARE and invited patient organisations from around the world to attend.