Rett Syndrome Ireland brief Oireachtas members
A delegation from Rett Syndrome Ireland held a briefing for TDs and Senators in Leinster House this afternoon to create awareness of the condition (and the related CDKL5 syndrome) which cause physical and intellectual disability, and to press for better support for those with the condition and their carers.
Commenting after the briefing the delegation’s host Caoimhhghín Ó Caoláin TD, Sinn Féin Health & Children spokesperson, said:
“This was an important engagement in which Rett Syndrome Ireland met a cross-section of Oireachtas members. It is vital that awareness of this and other rare conditions is raised. It was clear from today's briefing that parents and carers of children with Rett Syndrome and with other physical and intellectual disabilities are facing huge barriers within our health services as they try to access the supports they so badly need.
“Our focus must be, on a cross-party basis, to ensure that those obstacles are removed. The upcoming International Rare Disease Day on 29th February provides another opportunity to go forward on this basis and we will continue to work with Oireachtas members of all parties and Independents to make progress.” ENDS