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

by Marie-Eve Carrier | 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.

Official launch of SPIN-SHARE in Bordeaux

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. This meeting aimed to provide a general update on SPIN’s activities, but more importantly to introduce the SPIN-SHARE project and create multiple partnerships with organisations to ensure large-scale distribution of SPIN’s online toolkits. Attendees representing various countries and provinces (Australia, Portugal, the Netherlands, France, Canada, the United States, Ontario, Quebec, British Columbia, Nova Scotia, Manitoba, Saskatchewan) were happy to hear that our first supportive program would be ready for widespread distribution in English and French by the end of 2018!

 

Bordeaux Congress 2018 (2)

 

SPIN was fortunate to count Ms. Genevieve Guillot, Sclérodermie Québec and SPIN Patient Advisory Board member, amongst our guests to the SPIN-SHARE meeting in Bordeaux. Here are a few words Genevieve shared, describing her experience:

 

What a privilege to attend such a large conference! It was a first for me. I found it fascinating to witness healthcare professionals, researchers and patients from around the world meeting to share their expertise and experience on a single topic: systemic sclerosis. The SPIN team is internationally recognised, and I was fortunate to see first-hand the great levels of enthusiasm that the SPIN-SHARE project generated. Who wouldn’t be excited at the prospect of free online access to scleroderma-specific disease management tools?

 

During the conference, I was able to attend presentations on the current state of research, advances in treatments and overall management of the disease. More importantly though, I met people who are passionate, dynamic, dedicated and united by a common objective: to solve the mystery of this illness, and improve the quality of life of those impacted.

 

I sometimes say that I feel like an orphan when it comes to my disease, all alone on my ship when the sea that is my disease causes waves and shakes. This conference was a clear sign that I am not alone, nor am I forgotten. All over the world, generous, committed people work tirelessly to calm the storms caused by this illness, and help us to weather high winds and tides. 

 

To the SPIN team, and to all those who work towards improving our well-being, I extend a heartfelt, sincere thank you.

 

Geneviève Guillot

 

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The SPIN team would like to recognise the hard work of all our collaborators over the past 6 years in getting us to this point, and to thank the hundreds of patients who place their trust in us and participate in our research. We cannot wait to share our first program with you!

 

The SPIN team

 

Brett Thombs, Linda Kwakkenbos, Marie-Eve Carrier, Kimberly Turner, Julie Cumin, Mia Pépin, Mara Cañedo Ayala.