You are here

Get Connected Groups

Designed to connect individuals diagnosed with primary immunodeficiencies (PI) and family members in their local communities. The meetings can occur at a local community room, library, coffee shop, or online via Zoom. Through IDF Get Connected Groups, individuals and families living with primary immunodeficiency can connect to share experiences, receive information, and gain support. These groups do not include medical presentations or industry exhibits. 

Learn More & Register

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.

View the calendar and register.

Virtual Caregivers Support Group

Virtual Caregivers Support Groups are guided by a licensed mental health professional.

This is an opportunity for caregivers to meet and explore shared experiences as a caregiver. Participants must be 18 years or older and connected to a person with a PI (this includes grandparents, siblings, aunts, uncles, etc.).

Learn More & Register

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.

Register now

Peer Support

Speak with someone who understands. The IDF Peer Support Program is a caring community that connects people who share similar relationships to PI. Participation in the program gives you the opportunity to receive one-on-one peer support from others based on expressed interest.

Learn more & register

IDF Friends

IDF Friends is a private, supportive online community created by the Immune Deficiency Foundation (IDF) and designed for everyone in the PI Community, including you!

As a part of IDF Friends, you can share stories, discuss symptoms, get advice, and connect with others from across the country in similar situations.

Learn more & register