The Neurofibromatosis Association of Ireland
Who they are
The Neurofibromatosis Association of Ireland (NF Ireland) provide information on Neurofibromatosis to patients, doctors, consultants and teachers and promote awareness and an understanding of the problems encountered with the disorder every day!
What is Neurofibromatosis
Neurofibromatosis is a genetic disorder that affects more than 2,500 children and adults living in Ireland and 2 million people worldwide. Neurofibromatosis, or NF is a genetic disorder that causes tumours to grow on nerves throughout the body, and may cause blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and cancer.
What NF Ireland do
At NF Ireland they aim to be a voice for NF patients and their families. Their primary aim is to inform sufferers and their families of the disorder, support them and letting them know they are not alone with the condition. They provide support and information on Neurofibromatosis to patients, families, and healthcare providers. Depending on the individual needs of their members they do their best to provide them with the most up to date information on patients' condition.
What they are doing
They organise seminars to disseminate information/progress on research into NF and public awareness campaign. They provide advocacy and the provision of information, source information on specialised medical services yet unavailable in Ireland, encourage scientific research leading to a cure and provide financial aid where possible towards research.
Contact details are:
Instagram: www.instagram.com/nfaireland/
Helpline: 00 353 85 702 0024
Email: info@nfaireland.ie
Web: www.nfaireland.ie