Virtual Groups

Virtual Groups

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.

Adults and Parents of Children Living with Localized Scleroderma

ZOOM: 7 p.m. Eastern, monthly on the fourth Tuesday

Led by support group leaders Barbara Burke, Angela Bledsoe, and Kira Kistner

To register, email localizedSG@scleroderma.org.

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 bereavement@scleroderma.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

LGBTQ+ Support Group

ZOOM: 7 p.m., Eastern, monthly on the fourth Wednesday

If you are interested in learning more, please email support group leader Mary Forte with questions, lgtbq@scleroderma.org.

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 caregivers@scleroderma.org.

Newly Diagnosed Support Group

ZOOM: 7 p.m., Eastern, monthly on the second Wednesday

To register, email support group leader Ron Sasso at  newlydiagnosedsg@scleroderma.org

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

Spanish Speaking Support Group

To register, email support group leader Monica Ramirez at miamiradgroup@gmail.com.

Scleroderma Young Adults Seeking Connection (SYNC)

SYNC is a virtual community for young adults between the ages of 18 and 42, who are looking to connect with others in their age group who are affected by scleroderma.

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.