The Saoirse Foundation in partnership with a team of researchers led by Dr Honor Nicholl, School of Nursing and Midwifery at Trinity College Dublin is pleased to announce a forthcoming research study that will investigate the information needs of parents of children with rare diseases (The RD-WIFI study).

The study is made up of two separate investigations. The first part is where all parents and guardians of children with rare diseases were invited to take part in a focus group on May 27th, this was already very successful. The second and major part of the study will take place in June 2014 when a questionnaire will be released to all parents of children with rare diseases which can be completed online or by post.

The research team from Trinity College Dublin who are completing the study on information needed to develop a website are pleased to report that a focus group with parents has been completed and the second phase of the study is progressing. The online questionnaire for parents of children with rare conditions will be available on 4th June to be returned within 2 weeks. For those that need paper copies these can be sourced from The Saoirse Foundation directly and returned to Dr Honor Nicholl. . Please contact the Saoirse Foundation by emailing info@saoirsefoundation.com or phone 083 0044444 to be sent a postal questionnaire.

The Saoirse Foundation is also currently building Liam’s Lodge. It is located outside Tralee and close to Kerry General Hospital, phase one will see an initial ten specially designed units of Liam’s Lodge constructed to provide a week of much needed respite for 520 families each year. In the longer term it will grow to thirty units on our site, supplemented by a number of satellite Lodges around Ireland. We hope to be helping over 1600 families of children with rare and genetic diseases a year in the near future.

Liam’s Lodge will cater for medical, educational and recreational needs of the families during this special week. Families can also receive training in the extra skills required to care for highly dependent children.

Dr Honor Nicholl, TCD, said “A big thank you to the parents who travelled to attend the focus group and also to those who offered to contribute but could not attend for various reasons. The contribution of those who did attend has been of great value in the study. We look forward to hearing your views.”

You can access the questionnaire here: https://www.surveymonkey.com/s/RD-WIFI

Tony Heffernan, founder of The Saoirse Foundation added: “This study is crucial to help sick children and the families of children with rare and genetic diseases in Ireland today. We need as many people as possible to participate. We are dedicated to creating positive impacts for sick children and their families all over Ireland, this study and this research is only the tip of the iceberg. Thousands of parent from all over Ireland face similar challenges with children who suffer severely debilitating and often life limiting diseases. We want to help them face those challenges.”

The Saoirse foundation is currently working on building Liam’s Lodge, Irelands first national respite centre for children with genetic and rare disorders. The centre focuses on providing a unique environment for children as well as access to training and education for medical researchers and staff looking to specialise in genetic paediatric care.

Over 6-8% of the Irish population are affected by genetic and rare disorders and Liam’s Lodge and this study will help to research these as well as providing essential respite care to many families.