Books
- Educating Children with Velo-Cardio-Facial Syndrome
- Understanding 22q: A Guide for Parents (Nationwide Children’s Hospital new book, 2020)
- Missing Genetic Pieces “Strategies for Living with VCFS
- Just Jen: Invisible Differences
- Yearning for Normal -My Son's Life with Deletion 22q.11
- Velo-Cardio-Facial Syndrome: A Model for Understanding Microdeletion Disorders
- DiGeorge & Sean
- The Abilities in Me: 22q Deletion
Videos
Support Groups
Online Support Groups by State
Other Groups
Deletion 22q Support Group
Angels with Missing Pieces
Max Appeal UK Support Group
Missing Pieces Support Group
Our 22q-T’s Book
VCFS Texas
Missing Pieces “Living with 22q”
VCFS Warrior Parents
The Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
The Love for Madison Facebook Page
The Life of Beaz
MI VCFS/DIGEORGE/22Q
Australia - VCFS 22q11 Foundation
PDF List
EM Português: Síndrome 22q11.2 (DiGeorge/Velocardiofacial)
Landon's Leaps & Bounds
PDF List
Additional contact information for many of the 22Q Support Networks
Organizations
Is there a non-profit organization which benefits the lives of families affected by 22q (VCFS and/or DiGeorge Syndrome) missing from the list below. Simply ask a staff member from the missing org to send us an email at info@22qfamilyfoundation.org requesting to be added.
Our group offers basic information on the main chromosome 22 disorders, but mostly we are about connecting and learning from each other. Even our get-togethers (I hesitate to call them conferences) are informal and family style. No workshops, just good talk among friends. You’d be amazed what parents can learn from each other. We have a wealth of information between us all.
Chromosome 22 Central is a parent run support organization. We started in 1997 with just a handful of families who had children with what is now known as Emanuel Syndrome, and now we support over 1000 families in all corners of the world, who have many different chromosome 22 disorders. When we started out, the Internet was in its infancy, and we connected mainly by email lists. With social networking today, it is so easy to go on-line and instantly find supportive families who can help you.
Miscellaneous
Heart Defect Resources
