Get Connected Groups are open to anyone in the PI community, including patients and/or caregivers. These volunteer-led groups are a great opportunity to connect with a person within your state who has shared experience as either a patient or a caregiver. Get Connected Groups also has a growing list of affinity groups including young adults, parent groups, APS Type-1, and more.

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What Is The Purpose Of The Support Groups? 

The purpose of the Caregivers Virtual Support Group is to provide a safe, judgment-free, and confidential virtual space for peer support to caregivers of persons in the PI community. Participants will find community and a connection to others as the group addresses emotional distress associated with caregiving while exploring PI-specific challenges. 

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 person active in the care of a person in the PI community, including parents, grandparents, siblings, or others connected to the person in care. Each group is limited to six participants. The group meets for one hour, once a month.  

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 facilitator is an experienced professional who has worked with individuals who are dealing with rare or serious medical conditions in their family to provide individual and family support. 

If you have any questions, please email askidf@primaryimmune.org.

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