Who We Are

Who We Are

Who We Are

Our Ethos and Values

Since 22q11 Ireland began, more than 10 years ago, we have been dedicated to improving the lives of those living with 22q11 Deletion Syndrome.

These are our core values:

  • We strive to treat people with 22q11 with dignity and respect. People with the condition are different, not less.
  • We are agents for change, advocating for integrated care and improved resources for our community.
  • We are committed to excellence as a voluntary organisation that operates on principles of integrity and transparency.
  • Above all, we are a source of lifelong support for people with 22q11 Deletion Syndrome and their families, as well as medical professionals and educators.

Our families trust 22q11 Ireland to help them as they navigate their way through life with 22q11, and we advocate for the care and support they deserve.

Our People

22q11 Ireland was established in 2007 by Anne Lawlor, and has grown from a handful of families to a network of over 170 families nationwide.

Anne’s daughter, Aine, was diagnosed with 22q11, which sent their family on a search for answers, support and community. Finding little information available, Anne connected some of the first 22q11 families and over time, 22q11 Ireland was established. Anne holds a masters in nonprofit management from Dublin City University and a bachelors in theology and psychology from All Hallows College. Her experience as a parent of a child and now an adult with 22q11 has informed her ability to understand what other families might benefit from.

Anne serves as a chairperson of 22q11 Ireland and remains an inimitable resource and force for change in the rare disease community.

Our Goals

At 22q11 Ireland, our fundamental purpose is to provide support to our community, whether by offering information, resources, opportunities to meet, or just a safe place of understanding and empathy.

Our organisation also exists to further the care of those with 22q11, serving as champions for an integrated care model, wherein their medical, social and educational needs are met by multi-disciplinary departments working together to improve the overall life experience for children and adults with the syndrome.

Our vision is to improve the current medical, educational and social approaches to care, so that people living with 22q11 are treated in an integrated way that enables them to overcome obstacles more easily.

22q11 is recognised by the HSE as a rare disease, and we are proud to work with some of Ireland’s finest medical professionals in our dedicated clinics. A key goal of 22q11 Ireland is to continue to work with the government to safeguard this precious lifeline for families and transform it into a place of lifelong care.

We are agents for change, working to advance awareness and strengthen the coordination of care for people living with 22q11.

We strive to empower people with 22q11 to reach their optimal potential, enjoy fulfilling lives, and become advocates for the 22q11 community.

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