Emma O’Donoghue, a researcher from Cardiff University, is looking for parents or family members of children or individuals diagnosed with 22q11.2 deletion syndrome to take part in a research study called ‘The Experiences of Families Receiving a Diagnosis of 22q11.2 Deletion Syndrome in Ireland’.

Why participate? The research project aims to gain an insight into the experiences of families who have received a diagnosis of 22q11.2 deletion syndrome in Ireland. Families in Ireland often have to wait over a year, sometimes two years, for Genetic Counselling. By this time, parents have likely processed the diagnosis of 22q11 and become knowledgeable about 22q11 themselves. It is felt that Genetic Counselling support would be more beneficial for the parent(s) and family at or closer to the time of diagnosis.

Aine Lawlor Speaks at the Easyguide to Rare Diseases in Ireland.

Aine Lawlor was a wonderful representative of the 22q11 Ireland and the Rare Diseases community when she spoke at the Mansion House in Dublin at the launch of the updated Easyguide to Rare Diseases in Ireland.

John plans to run the Kerry Way Ultra 200km Run on September 6th, 2019 as part of  of the Wyeth Nutrition Askeaton Charity of the Year partnership.

Over two days and one night in early September, athletes will attempt to run the entire length of The Kerry Way without stopping. 

Conor's Walk

We would like to take this opportunity to highlight Conor's Walk which takes place over the May Bank Holiday weekend.

Christmas Cards

Picking your christmas cards? Then please pick ours. They are beautiful high quality cards designed and generously donated by Azpiral.


22q11 Ireland will receive 100% of all money raised.

Contact us for more information.

The wonderful Stephen Hyde is not just running the Dublin Marathon in aid of 22q11 Ireland he's also adding on an extra 5Km at the end that he'll run with his very adorable dog Cooper. This additional 5Km brings the total to an astonishing 50Km!

For all the information about the 2018 Educational Conference Follow the link. It's sure as ever to be a fascinating day.

Once more 22q11 Ireland was staggered by the amazing efforts of the Mums, Aunties, Sisters, Friends and supporters of 22q11 Irelands team at the VHI Mini Marathon.

A wonderful 61 runners made up of 4 teams and 11 individuals were part of team 22q and as this is one of our major fundraisers for the year we hugely appreciate everyones efforts.

Once again we have to thank the wonderful Gary Toner for his amazing fundraising efforts.


Gary Tonner along with his brother Dave and friends James Finnerty and Chris Mannering, climbed 15 Scottish mountains in five days.


They ended their challenge on May 9 with the tallest peak Ben Nevis, 1,345m, where snow nearly defeated them. They had climbed up to four mountains a day, using only hiking sticks, a total of about 15,000 metres in height. They did it without guides to ensure that all the money raised would support the group.

We celebrated the Eighth Annual 22q at the Zoo Day which was held in Dublin Zoo, Belfast Zoo and for the first time Fota Wildlife park.

Catching kids early and supporting them before they're in crisis can delay mental health disorders and reduce impairment


There are fewer more frightening or challenging psychiatric conditions for a family to face than psychosis, an extreme mental state in which impaired thinking and emotions cause a person to lose contact with reality. This could mean hearing or seeing things that aren’t there (hallucinations), or believing things that aren’t true (delusions).

Dr. Arlene Mannion a researcher at the Irish Centre for Autism and Neurodvelopmental Research (ICAN) in National University of Ireland, Galway (NUI Galway) along with her colleague, Dr. Geraldine Leader and a psychology student, Rebecca Gilligan are conducting a study on co-occurring problems in children and adolescents with 22q11.2 deletion syndrome.

Anne was recently asked to attend a presentation of a donation from AgSoc a UCD  student society who shocked, amazed and delighted us by raising a massive €50,000 for us.

Michael Hennessy interviews Anne Lawlor about the Multi System Genetic disorder 22q1,1.2 Deletion Syndrome, and also about her role on the Rare Diseases Taskforce and Professor Andrew Green who is a consulting in Clinical Genetics-based in the department of Clinical Genetics, at “Our Lady’s Hospital” Crumlin.

We are delighted to announce that Anne Lawlor Chair of 22q11 Ireland received one of the 2017 Rare Champion of Hope award for International Advocacy.

Hundreds of individuals and organizations worldwide were nominated by their peers to receive the RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. From the extraordinary list of nominees, esteemed panelists selected the recipients to be honored as RARE Champions of Hope.

GSK Ireland IMPACT Award Winner

22q11 Ireland were delighted and proud to be receive a GSK Ireland IMPACT Award

The GSK Ireland IMPACT Awards recognise and reward community-based charities doing excellent work to improve people’s health and wellbeing in Ireland.

WE WON!!!!

22q11 Ireland were the very proud recipients of the Small Organisations Community Impact Award at the 2017 Charity Impact Awards 

As many of you know our YEEP group was part of a research project carried out by Lorna Kerin, Fiona McNicholas and Anne Lawlor.

For more information on the results of this research please follow the link

Childrens Research Conference 2017

Aine lawlor(22q YEEP member) co-presenting with Ms Lorna Kerin (Mental Health Researcher) at the Childrens Research Conference 2017

As part of our commitment to financial transparency you can access a copy of our 2016 final accounts by following the link

Parents, clinicians, professionals and Overseas 22q experts together for a 22q11 Care-Coordination Development Pathway day in October 2017. 


This was a wonderful example of collaborative goodwill in action and thanks to everyone who participated. We are immensely grateful to our local clinicians and those who came from abroad and who gave so freely of their time and expertise. 

Fantastic Infographic on 22q11 Deletion Syndrome

We love this infographic and hope you find it as useful as we do.

It was created by the wonderful folks at The International 22q11.2 foundation (

22q11 Ireland Final Accounts 2015

As Promised please find a copy of our final accounts for the year 2015 on the link below

9th Annual 22Q11 Ireland Conference

Once again the committee are hard at work organising an amazing conference day for our families and the professionals who support them.


Click on the Read More button for the event details

22q11 European Alliance

We are proud to confirm that 22q11 Ireland are now officially members of the new 22q11 European Alliance and will welcome the European meeting to Dublin in 7th and 8th of October 2017

***Please Click the Read More Button for a copy of Dr. Rogdaki's presentation that was part of the 2015 conference.***


We have been contacted by Dr. Maria Rogdaki a Clinical Research Worker of Institute of Psychiatry  at  King’s College London, they are  looking for male and female volunteers aged  between 18-65 to participate in a research project. We are looking for volunteers who have 22qDS. 


Our thanks to Lorna Kerin of LoveKnowledge Consultancy, Dublin who gave a fascinating presentation at our 2015 conference and who has kindly shared the information with us. Click on the Read more button to access her presentation


Are you a father of a child with 22q11.2 Deletion syndrome? The University of Newcastle is interested in your experiences of well-being, coping styles, and access to support, as well as your level of growth since your child’s diagnosis. If you want more information, or would like to complete the questionnaire, please follow this link

Louise's 180k Cycle

Read the amazing Louise's story of the challenge she set herself in honour of 22q11 Ireland. We are so grateful for her and all of our fundraisers


"A year ago today, I didn't own a bike! I had only cycled once in the previous 15 years!! yesterday I cycled 180km around the Ring of Kerry. 
The last few months training have been pretty tough, there has been sweat, smiles, frustration, tears and fears. It was all worth it in the end!!

My main motivation for this cycle is my little nephew Jay. Jay was diagnosed with 22q last year. When I look back on the last year and how much he has been through I can't imagine how tough it is for him. Imagine being told as a 5 year old that you can't eat or drink anymore!! That's the reality for Jay. He is one amazingly brave little 5 year old boy who has adjusted so well to life with his 'tubey'. He is an inspiration to us all. 
When I'm struggling through training and feel like giving up, I think of Jay and all he has been through, he doesn't have the option to give up and he is still smiling!! 

The charity that I have chosen to support 22q Ireland have been a great support to my sister, her husband and to Jason over the past year. There isn't much knowledge about 22q in Ireland, therefore, it is crucial that we raise as much awareness as possible so people can get the support they need. I would very much appreciate your support in helping me to raise funds for 22q."

Exciting Research Project for our 18+ year olds!

Click on our read more button to see an information sheet about an exciting research project being carried out by Dr. Richard Roche and his team in National University of Ireland Maynooth.  It is always great to hear of Irish research projects like this as it can greatly benefit those of us living with 22q.


The 22q11 European Conference will be held in Brussels on the 10th and 11th of October 2015.


The full programme of the conference can be found on the page linked below

Research Project - Where do parents learn about their child's condition?

The Centre for Neuropsychiatric Genetics and Genomics

Institute of Psychological Medicine and Clinical Neurosciences  are currently carrying out research into this very topic and need your help.

Louise O'Regan has just gotten in touch to tell us about the wonderful fundraising event held by her her Stella and Dot Stylist sister Ruth.


It sounds like a wonderful evening. Click the read more button to read all about it


Thanks again for all your hard work ladies. It is hugely appreciated! 

Fun Family Day on Friday 2nd January 2015

We hope you are all surviving the pre-Christmas frenzy in one piece!!!


We are planning on having a fun family day on Friday 2nd January 2015 in Base Entertainment Centre, Maynooth Road, Celbridge, Co. Kildare (Click the read more button below for more information) at 12:30p.m.

We are delighted to be hosting a Vis A Vis Workshop in March


For more information click the read more button below


We will not be having a pre Christmas family day out but one will be arranged for early in the new year. We hope this will make it easier for our families who are all very busy at this time of year.

Article In The Irish Times

14 October 2014

Our wonderful Anne and Aine were featured in an article in The Irish Times about 22q11 D.S. Click the Read more button to read the article


If you have found us thanks to this article, Welcome please feel free to look around and get in touch if you would like any more information


Hello and Welcome to our new site. We hope you find it useful and look forward to hearing your feedback. Please let us know if you'd like us to add anything to it. 

Thanks to our Donegal Skydivers

On the 4th of August many brave souls took to the skies above Donegal Airport in support of 22q11 Ireland. The massive skydiving fundraising led by our own Marie O'Donnell has raised approx €10,000 for 22q11 Ireland. This is a massive amount for us and a huge achievement for everyone involved.

Thank You Lorraine

Every year the wonderful Lorraine organises our mini marathon team. It's always a wonderful day for everyone involved and is always a very helpful fundraiser for 22q11 Ireland


Thanks Lorraine for all your hard work!

Thank You to the Dempster Family Foundation

We would like to thank the Dempster Family Foundation for sharing their videos with us. They are a really helpful tool for everyone in the 22q11 Foundation.


Read more to go the Dempster Family Foundation Website

Meeting 19 January 2014 and Plans for 2014

Hi 22q families,



Starting from this year there will be 4 quarterly meetings where the committee will hold meetings which will then be followed by 'social' time and a stay-over for those who wish to do so (the last one proved to be a great success!)

Thank you Rick Guidotti

Many of the wonderful photos shown on our Site were taken by the Amazing Rick Guidotti of Positive Exposure.



Mental Jewellery

Thank you to the wonderfully talented people in Mental Jewellery who have designed some special pieces specifically for 22q11 Ireland


All profits from these items are donated directly back to 22q11 Ireland

Thanks to our lovely Models

Thanks to Aine, Niamh and Sarah for being our wonderful Cover Girls!

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Call us: Anne @ 087 7412856

Registration No. CHY17647

Ireland's National charity for children and adults diagnosed with 22q11.2 Deletion Syndrome. DiGeorge Syndrome and VCFS.

© 2017 by 22q11 Ireland 

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