22q Deletion Syndrome is one of the most commonly occurring chromosome deletions, yet few know about it. We want that to change!
You are here
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 email@example.com requesting to be added.
22q Alabama is a non-profit for individulas and families from the great state of Alabama affected by 22q11.2 deletion syndrome.
22q Central is a 501(c)(3) non-profit organization with the goal of promoting awareness and education regarding a common, yet many times overlooked, genetic disorder known as 22q11.2 Deletion Disorder, DiGeorge Syndrome, VCFS (velo-cardio-facial syndrome) and others. Parents, caregivers, and extended family of those with VCFS face difficult challenges that require practical solutions, and that is exactly what you'll find here. As a worldwide community resource center, we hope that you'll join the many voices of experience that speak here, and that you'll share in reaching out to others with your own unique perspective. We offer you a welcoming, safe and comfortable place to interact with other parents and professionals, and an opportunity to learn, share and get involved. We want to become "A friend of your family."
It all started when Anne, Derek and Margaret met at a conference in the UK and realised that there was a need for a similar group in Ireland and so 22q11 was born in 2007. With the help of Ken Doherty, the patron of our organisation and Rhona O’Connor (formerly Bank of Scotland) the original website was launched. As anyone involved in 22q11 Ireland will tell you our conferences are one of our biggest events of the year and the first one was no different. Eighty people were invited to the first conference, we expected forty and were surprised and delighted when one hundred and twenty came. Membership of the group went from three families to sixty and now stands at approx 90 families.
To provide support, spread awareness, and raise funds to assist 22Q families in the Kansas City Metro Area.
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.
Un enfant sur 2000 naissent avec le syndrome de Di George ou micro-délétion 22q11. Cette maladie est malheureusement méconnue et délaissée car elle est trop complexe. Cette fondation a été créée par Richère Céleste Raymond et Serge Mailloux, grands-parents de la petite Amanda Raymond-Lamoureux atteinte du syndrome de Di George. Avec l'aide et le support de la famille et des amis, ils désirent, grâce à cette fondation, aider d'autres enfants atteints de ce syndrome et leur famille qui auront à vivre, tout comme eux, une terrible épreuve où leur courage et détermination seront mis à rude épreuve.
Vision: Max Appeal's vision is of a Society where children and adults affected by 22q11.2 deletion are valued and able to fulfil their potential.
Mission Statement: To enable people with 22q deletion to lead an independent and economically prosperous life as possible with Max Appeal being the voice to achieve appropriate medical care, social support, employment and empowerment for individuals and their families.
The purpose of Mission 22q is to educate, support, and empower the individual, family, medical, and educational communities regarding 22q Deletion Syndrome. Mission 22q is a support group and non-profit foundation dedicated to making life better for people affected by 22q Deletion Syndrome by educating the world.
The VCFS and 22q11 Foundation are a group that consists of individuals with VCFS, parents, grandparents, siblings and carers of individuals with VCFS and professionals.
Mission: The purpose of VCFS Texas, Inc, is to provide support and resources to individuals with Velo-Cardio-Facial-Syndrome (VCFS) / 22q11.2, their families, professionals, and the community in Texas.