Running a support group is no easy task.

People with rheumatic diseases around the world count on support groups for education about their disease and emotional support. In scleroderma, many support group leaders feel overburdened or lack the training and resources to lead their groups effectively. To support these leaders and encourage new leaders to form their own support groups, SPIN has partnered with scleroderma support group leaders to create the SPIN-SSLED Program. This 13-week training program provides leaders with information and resources to help them feel more comfortable, confident and supported in their roles, and contribute to a more positive support group experience.



 Support Group Leader Testimonials


About the SPIN-SSLED Program

  • ​13 weekly sessions of 60-90 minutes led by a trained instructor

  • Each week tackles one aspect of leading a support group, including structuring a group meetingrecruiting new members, fostering a positive group culturesupporting yourself as a leader, and many other topics

  • Participants can attend the online videoconference sessions from the comfort of their own homes

  • Supplementary resources include:

1. A workbook that summarizes all modules.
2. An online forum where participants can discuss what they’ve learned with other participants.
3. An online Resource Centre with educational videos and support group activity ideas.

  • At the end of 13 weeks, participants receive a certificate attesting that they have successfully completed the program

SPIN SSLED Sample Certificate

Reviews: In a feasibility trial to evaluate the SPIN-SSLED Program, participants gave the program an average score of 9.4/10 for satisfaction. Here's what they had to say about the program:

“I recommend this training to help build your confidence, to gain understanding on the purpose of support groups, and to get different perspectives from other support group leaders. After the training and through our regular meetings, I definitely feel more confident and although there is always room for improvement, I know that I have the right team to help guide me there

"I learned a great amount of information ... I think it's a very valuable tool, and it's a great way to reach out to people with scleroderma."​

"I came without a lot of high expectations. I figured I knew how to do this... Completely false. Each one of the modules has stuff that I'm going to be using soon [in my support group]."​

"I found the whole thing informative ... I just think it was an amazing course." 

“I want to take this opportunity to tell you how much I appreciate the SPIN-SSLED program. My co-leader and I participated. We both fell head over heels in love with the instructor and our time together. We are busy using the information from the program to improve our support group. We have gone from a group that has meetings twice a year to a group that has 9 or more meetings a year... We are thrilled and we hope you communicate that. Thank you for offering us this training. It is really top of the line!”

Are you interested in trying the SPIN-SSLED Program?

SPIN researchers are starting a trial to evaluate the SPIN-SSLED Program in partnership with patient organizations.

You may be eligible to join our trial if you:
1. Are a leader of a scleroderma support group or are working with/would like to work with a participating patient organization to start a support group.
2. Are at least 18 years old.
3. Have regular access to a computer and Internet connection.


If you fulfill the criteria above and are interested in trying the SPIN-SSLED Program, please contact with (1) your full name and (2) the name of your local patient organization.

Virtual Support Group Central Database

One of the goals of the SPIN-SSLED Program is training new or current support group leaders to run virtual support groups accessible to patients from different geographical locations, especially where no in-person support group exists. During the current COVID-19 pandemic, virtual support groups are great tools to help receive emotional support and connect with other individuals living with scleroderma. Please see a list of available virtual scleroderma support groups run by SPIN-SSLED graduates below. The table will be updated periodically. If you are interested in joining one of the virtual support groups listed below, please contact the responsible person for more information. 


The SPIN-SSLED program has been funded by the Scleroderma Society of Ontario, the Canadian Institute for Outcomes in Rheumatology Care, and the Canadian Institutes of Health Research.

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