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Caring for a child with SCID is a stressful journey. Parents must navigate complicated medical procedures, social isolation, strained relationships, disruptions in work, and financial burdens all while ensuring successful treatment and recovery for their child. But, caregivers don’t have to go it alone.

As part of its virtual support outreach effort, SCID Compass offers Virtual Caregivers Support Groups, an online peer support program for those families whose children have SCID. Register now and join other SCID families for our weekly support groups, or read on to find out more about the program.

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What is the purpose of the support groups?

The purpose of SCID Compass support groups is to provide a safe, judgment-free, and confidential telehealth space for peer support to caregivers of children diagnosed with SCID. Participants will find community and a connection to others as the groups address:

  • Emotional distress associated with SCID-specific challenges
  • Access to community resources
  • The development of a positive network of peers

What topics will be discussed?

Group topics are based on the expressed interest of the group participants. Some current group topics include: support system awareness, use of resources in the community, emotional coping as a parent/caregiver, managing changes in relationships, setting boundaries with family members, child advocacy, coping strategies, self-care, and much more.

What is the group structure?

Support groups are open to any family member of a child with SCID, including parents, grandparents, siblings, or others closely connected with the family and their journey. Each family will be assigned to a support group based on their physical location and time zone. Groups meet weekly but may alter their meeting schedule to fit the needs of members. Each group is limited to six members.

Who facilitates the support groups?

Each group is guided by a facilitator who holds health care credentials and has training with facilitating group offerings. The group facilitators are experienced professionals who have worked with individuals who are dealing with rare or serious medical conditions in their family to provide individual and family support.

Click here to register now, or if you have any additional questions, feel free to reach out to fmofor@primaryimmune.org