Ireland’s first national hub launched to support those living with Foetal Alcohol Spectrum Disorder

·   Minister Anne Rabbitte welcomes launch of support service

·   Over 200,000 people across Ireland living with the condition

·   Ireland has the third highest prevalence of condition globally

27th March: Ireland’s first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD) will be launched today. FASD Hub Ireland will provide a compassionate, confidential helpline offering advice, support and signposting. The Hub is run by FASD Ireland, a not-for-profit social enterprise based in Ennis, and is part funded by Social Entrepreneurs Ireland. 

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia*. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

Welcoming the launch of the Hub, Minister of State for Disabilities, Anne Rabbitte TD, said: “As the Minister for Disability, I am delighted to support the launch of the FASD Hub. We need to build more awareness of hidden disabilities in Ireland including Foetal Alcohol Spectrum Disorder and today’s launch of FASD Hub Ireland is an important first step in this. I very much look forward to working with the team over the years ahead as we develop a deeper understanding of what supports need to be developed and how best we implement them.”

FASD results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum. Each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a life-long neuro-developmental condition. All people with FASD have many strengths. Early diagnosis and appropriate support are essential, especially for executive functioning.

The launch of the Hub at FASD Ireland’s HQ in Ennis will see Cathal Crowe TD, Violet-Anne Wynne TD, Senator Martin Conway and invited guests hear an overview from FASD Ireland on its strategy and future plans for the organisation. 

Tristan Casson-Rennie, CEO of FASD Ireland, said: “We are delighted to launch the hub which will help us meet the increasing demand for support that we are seeing from families, carers, educators, healthcare workers and the wider community across Ireland. Ireland has the third highest prevalence of FASD in the world yet little is known about the condition. The launch of the hub today is a significant step forward in our vision of raising awareness of FASD across the country, to break down barriers and be a catalyst for everyone with FASD to be able to live the life they strive for”.

FASD Hub Ireland has been partially funded from grant funding provided by Social Entrepreneurs Ireland’s Ideas Academy 2022, and lately its Action Lab 2023. 

“Additional funding will be required to meet the volumes of calls that are being received by FASD Ireland and we look forward to working with the HSE and Túsla to raise the awareness of FASD and provide essential support for people living with FASD across the country”, added Mr. Casson-Rennie.

FASD Hub Ireland’s support service will operate from Monday to Friday 10:00-16:00 each week and can be reached on 065 670 3098.

ENDS

Notes to editor:

*Prevalence survey by Jama Paediatrics by WHO Region in 2017 . Of 187 countries, South Africa was estimated to have the highest prevalence of FASD at 111.1 per 1000 population (95% CI, 71.1-158.4 per 1000 population), followed by Croatia at 53.3 per 1000 population (95% CI, 30.9-81.2 per 1000 population) and Ireland at 47.5 per 1000 population (95% CI, 28.0-73.6 per 1000 population).” Based on 2022 Census in Ireland, the population was 5,123,536. With a prevalence of 4.75% this equates to 243,367 people living in Ireland with FASD. In the same way, we know that in 2021 the number of babies born in Ireland was 58,443, so using 4.75%, that results in 2,776 babies with FASD. 

About Foetal Alcohol Spectrum Disorder (FASD)

Foetal Alcohol Spectrum Disorder (FASD) results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum and each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a lifelong neuro-developmental condition. More children are born every year with FASD than are born with autism spectrum disorder, spina bifida, cerebral palsy, Down's syndrome and sudden infant death syndrome combined.

About FASD Ireland

FASD Ireland is a not-for-profit social enterprise which provides awareness, education and support of FASD. Our organisation exists to support everyone with a connection (whether diagnosed or not) to FASD, and we provide a supportive environment for this to happen. FASD Ireland was established in 2021 to be the 'go to' hub for everyone living with FASD, including families, carers, educators, healthcare workers and the wider community across Ireland. www.fasdireland.ie