The Neurofibromatosis Association

 

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The Neurofibromatosis Association

The Neurofibromatosis Association is a patient focussed charity (Registered Charity Number 1078790) whose purpose is:

 

• to support people living with the diagnosis of Neurofibromatosis (NF)

• to create opportunities to improve their lives.

• to promote and fund research

 

Our Vision

To improve the lives of those affected by Neurofibromatosis.

 

Our Mission

The Neurofibromatosis Association (NFA) is the authoritative voice of Neurofibromatosis in the UK. We achieve this by providing first class information, support and advice; facilitating and promoting innovative research, and being an advocate for those with Neurofibromatosis .

 

Our History

The charity was founded in 1982 by two mothers who had children with Nf; now it operates out of a small administrative office in London using paid staff and some volunteers. This office acts as the support centre for the rest of the team scattered across the UK. The NFA works directly with families, funding the NF Specialist Advisor network - a small group of hospital based professionals - including one in Southampton covering Hampshire and surrounding areas.  The charity also produces written information in a series of fact sheets for families and professionals.

The charity is financed through the generosity of trusts, grant giving bodies, fundraising events, the membership and by the support of people who use our services and visit our website .  The funds raised for NF at the Jazz Weekend will be used specifically to support those living with Nf within Hampshire and adjoining areas.

 

The NFA funds a national Helpline to answer questions from people who have recently had a diagnosis of NF, from doctors caring for their patients, teachers and other professionals working within the care sector.

We are the UK’s leading authority on the condition and the only charity offering this level of support to those with NF, their families and the professionals working with them.

 

What is Neurofibromatosis? (NF)

Categorised into NF1 and NF2, the severity of the condition will vary from person to person and whilst some may live a normal life, many of those with NF could have a multitude of medical, physical and psychological complications. Facts include:

 

Currently, there is no cure for Neurofibromatosis but we hope that in the future, this will change.

 
* NF is one of the UK’s most common neurological conditions caused by a single gene mutation (a "spelling mistake" in the genetic code)
* NF occurs in all ethnic backgrounds, in both sexes, throughout the world
*

50% of new diagnoses occur without any other member of the family having NF. Doctors call this a spontaneous gene mutation.
* This means that potentially any baby could be born with NF.
* NF is a variable condition
* Neurofibromatosis can affect anyone regardless of family history, gender or ethnic background.
* Symptoms can include spinal cord and brain tumours, learning problems, visual and hearing impairment.
* NF can cause disfigurement and, in a few cases, premature death.
* NF1 and NF2 are separate and distinct conditions.
* NF1 is the more common form, occurring in 1 in 3,000.
* NF2 is the rarer type, occurring in approximately 1 in 33,000 people.
* A parent with the condition has a 50% risk (or 1 in 2 chance) of passing NF on to their children

 

For Further Information, please contact us:

 

The Neurofibromatosis Association

Quayside House

38 High Street

Kingston upon Thames

KT1 1HL

Surrey

0208 439 1234

Helpline 0845 602 4173

 

email info@nfauk.org

 

www.nfauk.org

 
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