What we do

What we do

What We Do

Family Support

At 22q11 Ireland, we aim to provide lifelong support for those impacted by 22q11, by welcoming and encouraging families living with 22q11 Deletion Syndrome with open arms and an empathetic ear, and by working to build a holistic care model that will help 22q11 patients and their loved ones throughout their lives.

Whether you’re seeking information on the latest in 22q11 research, trying to decide whether your child should attend mainstream or specialised school, or simply hoping for an empathetic ear wherever you are in the 22q11 journey, we hope to point you in the right direction.

We hold a once-yearly conference where families can learn about the latest developments in 22q11 research, speak with other families on similar journeys, and spark lifelong friendships that might make all the difference in the coming years. We have a vibrant Facebook community, so online support is likely only a click away. We also hold regular charity events and regional meet-ups.

Awareness & Advocacy

22q11 Ireland campaigns on behalf of people with 22q11 and their families in Ireland. We strongly believe that people living with 22q11 should be seen and treated as people, first and foremost. Our goal is to ensure they and their families are supported as holistically as possible, through coordinated care of medical services, educational supports, and social opportunities.

We work to educate the public about what 22q11 is and the best ways to support and encourage those living with 22q11. Many people have never heard of 22q11. We want to change that.
We work tirelessly alongside the HSE to ensure that those living with 22q11 are receiving the best-coordinated care.

Information & Research

22q11 Deletion Syndrome was only identified in the 1970s and while great advancements have been made in the care of people with 22q11, there is still much to learn.

22q11 Ireland works with medical, educational and research professionals to advance our understanding of the condition and its symptoms.

We also recognise that the experts on 22q11 are those who deal with the syndrome every day: the YEEP (Young Experts by Experience Panel) group is a pioneering initiative in which research is conducted with adults with 22q11, as opposed to on them.

What’s happening…