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.

This 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 where experiences of the need for parent-to-parent support and information for parents who are caring a child with a rare disease will be discussed.

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

Each focus group will take 60-90 minutes (max). Each participant will be given a payment of up to €40 to assist in travel expenses.

If you would like further information or if you would be interested in taking part in a focus group you can contact either Dr Catherine Tracey or Dr Aileen Lynch.
Catherine can be contacted by email: traceyca@tcd.ie or Aileen by telephone: 01 896 8571 and they would be delighted to answer any queries. Alternatively contact us at 01 8093871 or alpha1@rcsi.ie if you would like to discuss further.