Toolkit Resources | TRACC-R
Toolkit Resources
Recommended Resources
University of Michigan - Michigan Medicine Scleroderma Program
The Michigan Medicine Scleroderma Program is a multidisciplinary group of caregivers, scientists, and clinical researchers dedicated to advancing knowledge about scleroderma and related conditions.
University of Michigan - Michigan Medicine Scleroderma - Peer Mentor Program
University of Michigan-Michigan Medicine website for the Scleroderma Peer Mentor Program. Peer mentors are great because of the emotions you feel when initially diagnosed it may be helpful to someone else who has experienced the same diagnosis.
Website designed by the University of Michigan and University of New Mexico that teaches strategies for you to manage symptoms and advocate for yourself.
National Scleroderma Foundation
The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks. Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma.
Scleroderma Backers on Facebook
Offering community support for other patients through social and fundraising events and informal education. Connect with other people with scleroderma. This group is led by Michigan Medicine scleroderma patient volunteers.
Men with Scleroderma on Facebook
ScleroMen Support Group - connect with other men with scleroderma.
Keep those Scleroderma bodies moving, because yoga is for EVERY Scleroderma body - NO excuses!
Johns Hopkins Scleroderma Program FAQs
This website provides answers to frequently asked questions that may come up during the first few months of your diagnosis.
National Institute of Arthritis and Musculoskeletal and Skin Disease
This website provides some information on your diagnosis, treatment, and additional steps to take that have been found to be positive in the scleroderma diagnosis journey.
This website provides patients of all ages and their testimonials. For those newly diagnosed, it may be overwhelming, but listening to others' stories of hope will assist with the diagnosis.
This website has various helpful resources, including understanding scleroderma for family and loved ones and scleroderma for those diagnosed—various life hacks, symptom management, and how to make the most out of appointments.
Provides information on multiple rheumatologic diseases, including scleroderma. There are articles from patients and links to research and financial assistance.
This site provides articles on family planning with chronic illness. It shouldn't serve as a substitute for physician advice. It includes helpful tips from an occupational therapist with rheumatoid arthritis: "How to Protect your Body while Parenting a Baby."
You can search for recently completed and newly funded research studies on scleroderma that may be recruiting participants by going to clinicaltrials.gov and including systemic sclerosis/scleroderma or your specific condition.
Please note that this list is not exhaustive as resources are constantly evolving. Last updated 09/22/2024
