As a follow on from the 2014 study Web Information for Families of Children with Rare Diseases The Saoirse Foundation is pleased to announce an addition to the proposed website of parents of children with rare conditions. The addition is the development of the website’s parent to parent support, a recommendation from parents who took part in last year’s study.

The forthcoming study will investigate what parents of a child with a rare condition would like an online parent-to-parent support platform to contain/provide. Parents of children with a rare condition are invited to take part in one of the focus group interviews. The focus groups will take place in: Dublin (15th June), Tullamore (17th June), Galway (23rd June) and Cork (25th June) (venues to be confirmed).

This study will be conducted with researchers in the School of Nursing and Midwifery, Trinity College Dublin in collaboration with the Saoirse Foundation and is led by Dr Honor Nicholl and the study will involve focus group interviews. The study is kindly funded by the Irish Research Council.

Focus groups will be held in the following locations (venues to be confirmed):

– Dublin 15th June
– Tullamore 17th June
– Galway 23rd June
– Cork 25th June

Note: A payment of up to €40 will be given to assist you in travel expenses and light refreshments will be available at the venue.

If you would like further information or if you would be interested in taking part in the focus group please contact Dr Catherine Tracey by email: traceyca@tcd.ie or Dr Aileen Lynch by telephone: 01 896 8571 and they would be delighted to speak to you further.

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