Connecting families affected by 22q differences can offer numerous benefits for the entire family, not just the individual affected.
No one should face 22q alone. Our community brings families, caregivers, and individuals together to share experiences, find support, and celebrate every victory. Connection gives strength, hope, and understanding—because together, we thrive.
Peer Support
Families of individuals with 22q differences often find it helpful to connect with others in similar situations. Sharing experiences, tips, and resources with others who understand the unique challenges of 22q can be highly valuable for parents and other caregivers. We offer virtual opportunities to connect via support groups on Facebook, and virtual meetings.
Check-out the events tab for more information on an in-person event near you!
Access to Information
Connecting with the 22q community can provide access to up-to-date information about medical treatments, research, and resources for individuals with the condition. This information can help families make informed decisions about their health and care management.
Advocacy
Embracing support groups can offer the opportunity to strengthen advocacy efforts and generate awareness for the condition. Families can connect with local or national advocates or organize their own advocacy and awareness events and share with other local or virtual families.
Find Your Community
A special time for caregivers to relax, recharge, and connect with others who truly understand the journey of raising a child with 22q. These retreats provide more than rest—they help caregivers build a lasting support system and community they can lean on when times get tough. Friendship, understanding, and inspiration thrive here, because no parent should face 22q alone. A "can do it together" approach can sometimes help in finding resilience and coping strategies for the differing challenges and milestones. We are #22qstrong!
Reducing Disbelief and Skepticism
In some cases, families affected by 22q can feel isolated or misunderstood due to inadequate understanding or expertise on this rare genetic disorder by healthcare providers and the community. In that sense, groups or organizations specialized in 22q provide an area where its members can connect with utter understanding, kindness and adequate assistance that can reduce feelings of stigma or skepticism.
In general, connecting within the 22q community can offer a sense of validation and accommodating support, a connection to others facing similar challenges, access to helpful information, educational resources, and advocacy possibilities, as well as a platform for families and individuals across the globe to share, involve and find resilience. Children and adults with 22q differences have different challenges adapting and functional gaps that arise, connecting with other individuals and families allows a gain of rich insights into the challenges and individual differences in symptom presentation and respond.