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.

AveXis Reports on Rett Gene Therapy Program: AVXS-201

AveXis Reports on the Rett Syndrome Gene Therapy Program: AVXS-201 In June of 2017 AveXis announced that based on encouraging data generated by RSRT’s Gene Therapy …
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Rett Ireland are fundraising to get these trials in Ireland so Irish Rett girls can benefit.

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.