The Rett Syndrome Association of Ireland


Welcome to the

Rett Syndrome Association of

Ireland’s Website


The Rett Syndrome Association of Ireland is an association of parents and families of people affected with Rett Syndrome and other related disorders.


Rett Syndrome is a rare neurodevelopment disorder resulting in learning and physical disability. It affects girls almost exclusively. It often features repetitive and stereotypical hand gestures. The condition usually affects girls more than boys.


We provide support and information to each other and to families who have received a new diagnosis


We aim to raise awareness among medical and other professionals who work with people affected by Rett Syndrome and other related disorders, as well as public awareness of the conditions, and to encourage and assist Research.

HRCI-HRB Joint Funding Scheme 2022.

The Rett Syndrome Association of Ireland is an association of parents and families of people affected with Rett Syndrome.


The association is a member of the Health Research Charities Group, and we are pleased to announce that we are accepting applications for financial support for research projects as part of the HRCI-HRB Joint Funding Scheme 2022.


Research projects will relate to Rett Syndrome with an emphasis on Public and Patient Involvement. The total anticipated funding is €50,000, payable over one to three years.


Applicants can email Dr Jamie Maguire, (Research Support Officer of the Association) at with initial proposals of an intention to submit by 24th of October 2021. Full applications must be received by 5pm Friday the 26th of November 2021.

Family Weekend 2019

Rett syndrome Ireland hosted their annual family weekend on the 4th – 6th of October for families of children with Rett Syndrome at the McWilliam Park hotel, Claremorris.

Brain Disorder Event, Slane Castle

Recently there was an international event for brain disorders hosted at Slane Castle, which Rett Syndrome was in attendance. Our Chairman Mr Declan McPhillips spoke to various Researchers about the condition, with very promising feedback received from Researchers on the condition. Research is also high on the Rett Syndrome agenda and will be the focus of the Rett Syndrome Ireland 2019 conference taking place in October.

Dr Ciara Kelly from Newstalk

Dr Daniela Tropea (Rett Genetics) and Laragh’s mum Carina Conyngham (Rett Parent) were speaking to Dr Ciara Kelly on Newstalk’s Alive & Kicking show on Sunday morning (29th October).


Ireland AM - Rett Syndrome Awareness

Andrew Kehoe (father of Sarah who has rett syndrome)  and Lynnmarie with her daughter Jessica promoting rett awareness on Ireland AM on the 20th October


Kfm Interview

Lynnmarie mother of Jessica was at Kfm on Thursday 12th of October raising awareness of rett syndrome and promoting text Rett to raise money for Rett Syndrome Ireland.


Family Weekend 2017

Rett syndrome Ireland hosted their annual family weekend on the 6th – 8th of October for families of children with Rett Syndrome at the Sheraton Hotel in Athlone.



Slane Castle

Slane castle was  lit up for the month of

October for rett awareness month.