About NF Ireland

Information, help & support
for those who need it.

About 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, genetic counselling service 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.

Neurofibromatosis Clinic

In 2011 a Neurofibromatosis Clinic was set up at the Department of Clinical Genetics, Our Lady’s Children’s Hospital, Crumlin, Dublin 12. Referrals are accepted from Consultant Clinicians or GPs by way of written referral letter . For families who have already been seen by the clinic’s specialists it is possible to make an appointment by phoning 01- 4096902 and quoting the genetics reference number which is on the top of all correspondence.

Genetic Counsellor

The Neurofibromatosis Association retain the services of a genetic counsellor based at the Neurofibromatosis Clinic. The service is paid for by NF Ireland and is available free of charge to all patients and families affected by NF.

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 Neuro Foundation 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
  • TTo 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.