Scleroderma support groups provide individuals opportunities for education, emotional support, and connecting with others who share the disease. However, access to such groups can be limited by geography, health issues, and the current COVID-19 pandemic. Fortunately, The National Scleroderma Foundation has several virtual groups to help individuals bypass help these barriers and increase participation. Not only do virtual groups allow for a safer and more accessible support, but they also provide an opportunity for more targeted discussions, allowing individuals within specific demographics to connect and share their unique experience with Scleroderma.
We are working diligently to expand our network of support groups and are always interested in motivated, dedicated volunteers to assist us in that endeavor. To find out how you can help, please contact us at (800) 722-4673.
Bereavement Support Group
ZOOM: 7 p.m., Eastern, monthly on the third Tuesday
If you have lost a loved one to scleroderma, you may find support and solace in speaking with others who are grieving or have been through a journey similar to yours. If you are interested in learning more, please email support group leader Ciara Diemer, LCSW firstname.lastname@example.org.
BIPOC Support Group
The National Scleroderma Foundation’s BIPOC Support Group was founded to address the needs of Black, Indigenous, and People of Color affected by scleroderma. This new virtual support group provides innovative educational opportunities, emotional support, and scleroderma related resources.
Lead Facilitators: Marilyn Sibley
Caregiver Support Group
ZOOM: 7 p.m., Eastern, monthly on the fourth Thursday
This group provides a source of emotional and social support and resources for those caring for a loved one with scleroderma. We will share self-care strategies and tools to reduce stress and enhance coping. We welcome adults, spouses, family members or friends in the caregiver role to attend. To register, email support group leader Debbie Haussler at email@example.com.
Parents of Children with Scleroderma
As a parent, you’d do anything for your child. When you found out your child had scleroderma, you were likely filled with some shock, confusion and fear. Maybe you didn’t know what scleroderma was. Or its effects. Or what it would mean for your child’s future. Luckily, the National Scleroderma Foundation Michigan Chapter makes it our mission to increase awareness, raise funds for research and build support. To help Parents of Children with Scleroderma, we’re excited to announce our newest support group designed specifically for you. This group joins a collection of existing groups throughout the state. Each meeting, we’ll focus on a different juvenile scleroderma topic–from managing the needs of everyone in the house to self-care for caregivers. It’s our hope that you’ll join us, ask questions, find comfort, and leave with a sense of hope and support for your child.
Meets virtually via Zoom:
First Wednesday, Even Months, 7:30 – 9 PM Eastern (e.g., June, August, etc.)
First Wednesday, Odd Months, 3:00 – 4:30 PM Eastern
The 20%: A Virtual Support Group for Males Living with Scleroderma
Scleroderma diagnoses are less common amongst men. In fact, only 20% of the patient population is made up of males. We’ve designed a support group especially for males with scleroderma. In it, you’ll learn scleroderma tips and resources and find support from others in your position. Each meeting, we’ll focus on a different topic – from mental health to intimacy and so much more.
Contact the support group leaders with questions.
Meets the fourth Wednesday of the month (with some exceptions) from 7 p.m. to 8 p.m. Register here for each date you’d like to attend.
Inspire Discussion Board
Inspire is a safe and secure online community for individuals affected by different health concerns to communicate with each other on topics of mutual interest. The National Scleroderma Foundation sponsors a an Inspire community to connect individuals who have scleroderma, their families, friends, and caregivers for mutual support and inspiration. Inspire is a trusted partner of the Foundation. Your personal information, identity and contacts and more, is secure and never shared. Join more than 76,000 individuals in the scleroderma community and get inspired today!