NEURO – FIBROMA – TOSIS (NF for short) is a serious neurological disorder caused by a single gene affecting over 2,500 children and adults throughout Ireland.
The Neurofibromatosis Association of Ireland has recently been renamed Children with Tumours. There will be changes to the website, literature as well as the charity logo over the coming months but the association will continue to support the NF community in Ireland.
The Neurofibromatosis Association of Ireland largely depend on voluntary donations to deliver essential services to families affected by Neurofibromatosis, in fact without voluntary donations and sponsorship events this support group could not survive.
Currently the main focus is on the development of services at the newly established Neurofibromatosis clinic conducted by Professor Andrew Green at the Centre for Medical Genetics, Our Lady's Hospital, Crumlin.
A counselling services paid for by the association and available through the clinic can make a real difference particularly to the lives of those newly diagnosed with this common but little understood genetic condition Neurofibromatosis.
Neurofibromatosis (NF) is a genetic condition. This means it belongs to a group of health conditions that can be passed on in families from one generation to the next through the process of genetic inheritance
At NF Ireland we aim to be a voice for NF patients and their families. During our work we are continually inspired by those around us who fight Neurofibromatosis on a daily basis.
We rely on fundraising, donations and corporate support in order to continue to provide vital information and support services to the friends and family of people affected by NF, free of charge.