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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.

Halifax Patient Forum 2018

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

  • | Nov 29, 2018

On November 24th, SPIN Director Dr. Brett Thombs travelled to Halifax to discuss SPIN programs that are expected to be available to the scleroderma community in 2019, including the SPIN-HAND program and the SPIN Support group Leader Education (SPIN-SSLED) Program.

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Thank you to the Scleroderma Association of Saskatchewan!

  • | Oct 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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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.

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SPIN Research Suggestions

  • | Apr 19, 2018

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

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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.

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Thank you to the Scleroderma Society of Nova Scotia!

  • | Dec 12, 2017

The SPIN team would like to offer our gratitude to the Scleroderma Society of Nova Scotia, its board members, and its President, Jason Doucette, for their generous $5,000 contribution to the SPIN-SHARE project.

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SPIN and the Scleroderma Framed Foundation

  • | Jun 26, 2017

SPIN's Co-Director, Dr. Linda Kwakkenbos, posing with 2 models from the Federation of European Scleroderma Associations (FESCA) campaign for World Scleroderma Day 2017.

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SPIN at the Walk for Scleroderma

  • | Jun 15, 2017

SPIN recently had the pleasure of attending the first annual Walk for Scleroderma held on June 4th, at Parc du Domaine Vert in Mirabel.

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A first look at "Share Your Scleroderma Story"

  • | Apr 21, 2017

Here are some examples of testimonials we filmed last summer, with Amy Gietzen (Scleroderma National Patient Education Conference, in New Orleans, USA) and Geneviève Guillot (Scleroderma Canada Annual National Conference, in Montréal, Qc, Canada), sharing their experiences with diagnosis in English and French!

Dr. Brett Thombs giving his presentation on health care management and decision-making

A quick update on SPIN

  • | Oct 25, 2016

SPIN is constantly growing and now has 36 recruiting sites located in Canada, the United States, France, and the United Kingdom. The number of active participants enrolled in SPIN has reached 1289. The continued success of this project would not be possible without your participation!

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Share your scleroderma story

  • | Apr 15, 2016

Individuals living with scleroderma are the best resource to help others live better with the disease. Therefore, we are looking for individuals with scleroderma to share their experiences of living with the disease in a brief video testimony, as well as strategies that have helped you live better with scleroderma.

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Recap of the 2015 Scleroderma National Conference

  • | Sep 24, 2015

We would like to thank everyone who participated in the Scleroderma Society of Canada’s 2015 Scleroderma National Conference in Hamilton, Ontario, on September 18th and 19th – it was a huge success!