NF Association of Ireland
The Neurofibromatosis Association of Ireland (NF Ireland) was founded in 1985. NF Ireland provide a comprehensive range of services including a 24-hour Helpline, literature on the condition and information but its primary aim is to inform sufferers and their families of the disorder, supporting them and letting them know they are not alone with the condition.
Literature
Literature on NF includes: The Child with NF1 – Tell Tale Signs; Talking to Your Child; NF1 for Teens; Learning Difficulties in Children with NF1; Learning and Cognitive Difficulties in NF1; Clinical Guidelines for Managing NF1 (essential reading for health professionals). A simpler format is available for patients and NF families.
Keeping in touch
The NF Association keeps in contact with many similar bodies across the UK, Europe and the United States, such as the Nerve Tumours UK and the Children’s Tumour Foundation. Representatives attend conference abroad and share information on new research and developments with our members being kept up to date through our newsletter and the Association website. Monthly meetings, countrywide seminars, respite weekends, awareness programmes through the medium of press and radio all form part of the activities and services provided by NF Ireland.
Aims of the NF Association
Information & Research
To provide information on NF to patients, doctors, consultants and teachers and to promote awareness and an understanding of the problems encountered with the disorder
To organise seminars to disseminate information/progress on research into NF
To organize public awareness campaign
To provide advocacy and the provision of information
To source information on specialised medical services yet unavailable in Ireland
To encourage scientific research leading to a cure
To provide financial aid where possible towards research
The Community
To bring sufferers of NF together in order to overcome the feeling of isolation they may experience
To maintain liaison with like-minded organisations and the medical professionals nationally and internationally
Provide continued support to the Neurofibromatosis Clinic
Provide links between sufferers and health professionals to their mutual benefit and incorporate different medical services in the form of a multidisciplinary clinic.
Family Support
Association strives to fund a Genetic Counsellors salary
To develop activities to increase quality of life for affected families
Conduct respite weekends for NF families with a focus on children and young adults
Fund Raising
To organise and support fundraising activities to realise the aims of the Association
To lobby government and state bodies to provide financial support towards mutually agreed goals of the NF Association
Policy Development
To make a positive contribution to the policy-making decisions of the HSE and other state bodies.
History NF Association of Ireland
The first meeting of the association was convened in Cork in January 1985. The founder members were Mrs. Chris Lee (RIP), Mr. Peter Swanson (RIP) and Mrs. Bunny O’Connell. The Association was originally known as P.H.O.N.E., which stands for Patients and Helpers of Neurofibromatosis. The Association was subsequently renamed the Neurofibromatosis Association of Ireland. It is a mutual support group with the primary aim of informing suffers and their families of the disorder and letting them know they are not alone with their problem.
Since its foundation, the range of services provided by the Association has expanded considerably. In the early years, a particular focus was placed in publicising the condition and getting the Association established. This involved providing information on the condition, creating an awareness of NF among the medical profession and giving guidance and support to people with NF. Gradually doctors and consultants became aware of the work of the group and referred suffers to the Association.
A significant achievement by the Association was the production and circulation of a video on NF. It was the first video ever made on the condition and was circulated to medical schools, hospitals, doctors and to NF sufferers and their families.
An information exchange programme was cultivated between the Neurofibromatosis Association of Ireland, doctors and the UK NF Association. This sharing of information and experience facilitated a vast build-up of knowledge about the condition within the group. Information on the effects of NF and progress on research was in turn disseminated to sufferers and their families. Activities such as summer camps were organised by the UK association for children under 18. Each year through invitation, and supported by the Irish Association, children have had the opportunity to attend this summer camp.
Medical experts on the condition were invited from abroad to come to speak at Association meetings and workshops. The Association also managed from its limited resources to make small donations towards research.
The Neurofibromatosis Association of Ireland is indebted to the founding members of the Association for their voluntary effort and the tremendous support they provided to the many sufferers and their families who sought their help over the years.
Make a donation
NF Ireland relies on the donations of the many individuals and companies who give their money and time on behalf of the charity. We appreciate every bit of help we can get which helps us continue our work.