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Epilepsy Action

Epilepsy Action logo For the 75 people in the UK who are diagnosed with epilepsy every single day it can be a distressing and disturbing time, a time when they have many questions to ask but find very few avenues to find the answers. Epilepsy Action can fill this gap by providing advice and support in a number of ways.

What we do

Epilepsy Action is the largest member-led epilepsy epilepsy in Britain, acting as the voice for the UK's estimated 456,000 people with epilepsy, as well as their friends, families, carers, health professionals and the many other people on whose lives the condition has an impact.

and we offer

We campaign to

improve the understanding of epilepsy in schools,
give people with epilepsy a fair chance of finding and keeping a job,
raise standards of care through contact with doctors, nurses, social workers, government and other organisations,
promote equality of access to quality care,

with campaigns like

We fund research

The Neurofibromatosis Association

The Neurofibromatosis Association (NfA) is the only UK charity dedicated to the provision of support for those affected by either neurofibromatosis type 1 (Nf1) or neurofibromatosis type 2 (Nf2), their families and the professionals concerned with their care. Although they share some similar characteristics the conditions are, in fact, two separate genetic disorders and there is still, understandably, some confusion over both their similarities and their differences.

Neurofibromatosis type 1 was first described by von Recklinghausen in 1882 and was originally named after him. It affects 1 in every 2,500 people world-wide and some 24,000 in this country alone. Complications include learning difficulties, behavioural problems, large benign skin tumours, and internal spine and brain tumours; there is also an increased risk of epilepsy. While only recognised as a condition about 120 years ago, a 2,000 year old Greek statue shows the visible ‘lumps and bumps’ that are so characteristic. It is almost certain that Victor Hugo’s Quasimodo, the Hunchback of Notre Dame, was affected by Nf1 and it may be that the author also had the disorder.

Neurofibromatosis type 2 is seldom diagnosed until loss of hearing has occurred and, by that time, those affected are in their late teens or early twenties. First described in 1822 (Wishart), while an affected person may have some visible neurofibromas on their skin, most of the benign tumours form in the brain or on the spinal cord; the main diagnostic feature are bi-lateral vestibular Schwannomas (tumours on the nerve of balance) which, as they grow, affect a person’s hearing.

There is, as yet, no effective drug treatment for either condition and, in most instances, the only relief from symptoms is surgery.

The Neurofibromatosis Association was formed in 1982 to provide help, support and advice not only for those affected but also their families and the professionals involved in their care.

What we do

We employ a network of hospital-based professionals who help co-ordinate the care and treatment of those with either Nf1 or Nf2. Quite apart from visits to their GPs, often those affected by either condition need to be seen by a range of specialists from different hospital departments – genetics, ophthalmology, dermatology, orthopaedics, plastic and maxillo-facial surgery among others. Our Support Co-ordinators are able to liaise between all the individuals concerned, especially when the concerned patient – or their family – have questions and problems arising from their condition;
We provide a telephone helpline
We provide relevant and specific literature for patients and the professionals involved in their care; there are three issues a year of the NfA newsletter. Publications on neurofibromatosis include:

Neurofibromatosis Type 1

Clinical guidelines for the management of individuals with Nf1 (for professionals)
Nf1 – a guide for families who have a new diagnosis
The newly diagnosed child with Nf1 – a guide for parents
The child with Nf – a guide for health professionals
Talking to children about neurofibromatosis
Nf1 – information for teachers
‘Achieving in spite of ….’ – a booklet on specific learning difficulties
Examples of the problems experienced by some children with Nf1 and learning difficulties
Challenging behaviour
Developmental co-ordination disorder
Disorders of bone growth and soft tissue changes
Congenital pseudarthrosis
Nf1 and scoliosis
‘Polly’s best friend’ by Gina Malyon (for girls under 10)
‘The winning goal’ by Gina Malyon (for boys under 10)