Living with scleroderma can be challenging, but having the right tools and support can make a difference. That’s why the Scleroderma Patient-Centred Intervention Network (SPIN) is excited to launch SPIN-SELF, a free online program designed specifically to help people with scleroderma build confidence, manage symptoms, and improve day-to-day wellbeing. The online SPIN-SELF toolkit will be available free of charge to everyone in August 2026. SPIN will also be offering SPIN-SELF group sessions later this year.

SPIN is an international collaboration of researchers, healthcare professionals, patient organizations, and people living with scleroderma who work together to develop and test programs that help people better cope with the daily challenges of the disease. Our programs are developed and evaluated within the SPIN Cohort, a multinational research cohort of more than 3,000 people with scleroderma from seven countries, including Australia.

What Is Self-Management?

Self-management is an important part of living well with a chronic condition. It involves developing the skills and confidence needed to manage symptoms, maintain quality of life, and cope with the emotional challenges that can come with illness. Many generic self-management programs exist for chronic diseases, but until now, none had been shown to be effective for people with scleroderma. We believed that people with scleroderma deserved a program designed around their unique experiences and needs.

What You’ll Find in SPIN-SELF

The SPIN-SELF program combines a comprehensive online toolkit with peer-led group sessions designed specifically for people with scleroderma. The online toolkit includes educational videos, practical information, goal-setting tools, and strategies to help people build new skills and healthy habits. Topics covered include fatigue, pain, itch, sleep, emotions and stress, nutrition, skin care, changes in appearance, and communication with healthcare providers People can also sign up to take part in videoconference group sessions where they can learn from others, share experiences, exchange practical advice, and support one another.

Developed Together By Researchers and People Living With Scleroderma

The SPIN-SELF journey to developing effective self-management resources designed specifically for people with scleroderma began more than six years ago. When we first tested the online toolkit, we discovered something important: many people were not using it on their own. Members of the SPIN team, along with people with scleroderma, then designed and incorporated online peer-led group sessions. These sessions are meant to guide people through the toolkit modules and to provide a format for people to support each other in using the program. SPIN-SELF was created not only for people with scleroderma, but also with people living with scleroderma.

Does SPIN-SELF Work?

Yes! In a clinical trial, participants who received the SPIN-SELF program reported greater confidence in their ability to manage their condition compared to participants who did not receive the program. Trial participants highlighted the value of the group sessions, noting that sharing experiences and practical advice with others who understood the realities of living with scleroderma was one of the program’s most valuable aspects. As a result, SPIN-SELF is the first self-management program shown to improve self-management skills and confidence in people with scleroderma.

A Milestone Worth Celebrating

The SPIN-SELF program has undergone years of development, testing, refinement, and collaboration to ensure that it truly meets the needs of the scleroderma community. We are thrilled to finally make it available to everyone. We would like to sincerely thank Scleroderma Australia and other patient organizations around the world that have supported the development and upcoming launch of SPIN-SELF.

Ready to Get Started?

The SPIN-SELF online toolkit will be available free of charge in August 2026, and online groups will be offered later this year. To learn more or express interest in joining a SPIN-SELF group, please contact spinself@gmail.com. We look forward to welcoming you to the SPIN-SELF community or saying hello again to old friends!