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Chromosome 22 Central
Support for Disorders of
Chromosome 22


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Chromosome 22 Central is a parent run support organization. We started in 1996 with just a handful of families who had children with what is now known as Emanuel Syndrome, and now we support over 3000 families in all corners of the world, who have many different chromosome 22 disorders.

Our group offers basic information on chromosome 22 disorders here on our website, but mostly we are about connecting and learning from each other on our social media platforms. You'd be amazed what parents can learn from each other. We have a wealth of information between us all.

We also are happy to advertise studies from researchers. You can click on the top tab to see which current studies you might be able to participate in.

We receive no formal funding to support this website. All of our support comes from the generosity of our members.

What else is C22C about?

We raise funds to support activities that are important to us. We don’t charge membership fees, so we count on the generosity of members who can help us fundraise.

We maintain a website that allows people to find others on the same path.

We help researchers who want to learn more from our families by posting their studies.

We sometimes help fund conferences for other organizations that would benefit our members.

We pay for food and meeting spaces for C22C families who connect online and want to get together in person. 

We have covered childcare costs for other organizations conferences.

We have mailed out over a thousand parent guides on Emanuel syndrome, for free. 

We run awareness campaigns on social media so people learn about us. 

We have held several past family conferences and plan for more in the future. 

We ensure our group is easy to find so families can find the support they need by registering with other larger umbrella organizations. 

We connect with other groups like ours who do amazing things in support of others and share about their activities and events. 

We try to fill the gaps where we find there isn’t enough support or information for families. We want feedback from our members to tell us what they need.

Our existence allows families to feel part of a community so they don’t feel alone on this journey.

We live each day to the best of our abilities with our family members and shine the light of the world upon them through our advocacy and awareness efforts. 

We offer comfort in the support of each other, validation, strength and community. 

We are C22C. Welcome to our family.