About The Neurofibromatosis Association

The Neurofibromatosis Association (NfA) is a medical charity dedicated to the provision of support, advice and help to those affected by the genetic disorder neurofibromatosis (Nf). 

Currently there are some 25,000 children and adults affect by the disorder in this country.  Approximately half those affected inherited the disorder from a parent, but the other 50% will have developed it through new gene mutation. 

At present there is no known cure, but the NfA is committed to funding research into this little known disorder. 

Through the Neurofibromatosis Association's network of regional co-ordinators, the charity is able to offer help, support and advice to those affected, their families and those concerned with their care.

Our history

Two mothers of affected children started the Neurofibromatosis Association back in 1981.  They were concerned by the lack of information about neurofibromatosis and the fact that many doctors seemed to have little knowledge of the disorder. 

By 1983, through the hard work of these two women, LINK (Lets Increase Neurofibromatosis Knowledge) was established with over 200 members.  In 1990 the first full time office was established with two full-time employees and by 1991 LINK had its first two Family Support Workers covering the north and the south of the country. 

Two years later it was decided to change the name of charity to The Neurofibromatosis Association because it would be easier to be found by people who wanted help. 

By 2002, its 20th anniversary year, the Neurofibromatosis Association’s turnover had increased to almost a million pounds, it employs 14 neurofibromatosis co-ordinators nationwide, six head office staff and supports over 5,000 individuals and families.