Welcome

The Rett Syndrome Association of Ireland is an association parents and families of people with Rett Syndrome. We came together to provide support and information:

to each other
to parents and families who have received a new diagnosis
to raise awareness among medical professionals and others who work with people who have Rett Syndrome
to raise public awareness of the condition and it's effects on those affected by it.
to encourage and assist research.

Patrons: Paraic Duffy, G.A.A.; Miriam O'Callaghan, Broadcaster; Dr. David Webb, Consultant Pediatric Neurologist

The Rett Syndrome Association of Ireland is a registered charity in Ireland - CHY 16340

Rett Syndrome Ireland

Rett Syndrome Europe Meeting

04 December 2011

At a meeting in Paris in early November there was a meeting of Rett Syndrome Europe. This is a pan-European network of Associations.

At the meeting, our own Emmet Harten, Committee member of the Irish Association was elected President of Rett Syndrome Europe.

At the meeting the various associations gave a brief overview of the work they do. Obviously, the bigger countries have larger memberships. The UK have 900 families on their books, and a full time staff of 5. In France they know of 450 families, Italy 400. Spain - Catalonia have about 100, while we have just less than 70. Belgium has a similar number. In Hungary there are about 100 families. The different Associations have varying budgets too. Some have support from their Governments, some like ourselves rely on Fundraising.

Rett Syndrome Europe have decided they need to review and revitalise the organisation and they have set themselves an ambitious programme including improving communication, improving support to Families, partnerships with organisations for similar conditions and to rebuild links with countries where contact has been lost.

Upcoming events include conferences in Barcelona, February next, the New Orleans's World Conference in June next and the 3rd European Conference in Amsterdam, 2013.

You can visit their website here

Family Day a Great Success

FD11a

More than 90 members and families - including more than 20 girls - turned up for the Family Day at the Newpark Hotel in Kilkenny on Saturday October 1st, last. It was a great day, and full of information and conversation and news.

Andrew Kehoe, Chairperson of the Association introduced all the speakers. Susan Boland talked about the care issues as the girls reach puberty, and fielded a lot of questions from the families. It was a very useful session for all those there.

Edinburgh 2010 Report

Written by Terry Devlin | 15 February 2011

The recent European Conference on Rett Syndrome in Edinburgh had a series of fascinating presentations and reports that were full of excellent information and news that will give us hope for the future

Dave Hewetson, a parent from Glasgow, attended the Conference and offered this detailed and excellent report in the Event. It's long but very readable, and well worth the time. It's written by a parent with other parents in mind.

A very special Thank You to Dave for allowing us to add it to the website.

You can read Dave's report from Edinburgh here