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.
