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.
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
