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The Neuro Foundation

The Neurofibromatosis Association was established in 1981 by families with a diagnosis of neurofibromatosis to help others. It became a registered charity in 1982, and a limited company in 2000. In September 2010 it changed its name to The Neuro Foundation. This is the working name of the charity, while its legal name is retained as The Neurofibromatosis Association.


To improve the lives of those affected by neurofibromatosis.

The Neuro Foundation work in collaboration with the NCG funded service to achieve this.


To enable people concerned about neurofibromatosis to find solutions appropriate to them.

The charity delivers its mission through five services to members, supporters and beneficiaries. It endeavours to :

  • Inform – Provide accurate, relevant and up to date information that explains the conditions of NF1 and NF2, the implications, challenges and opportunities, in language understood by all.
  • Advise – Provide practical and emotional advice to help people find the best services and support available. The Neuro Foundation enable people to make choices about how they approach and live with neurofibromatosis.
  • Advocate – They aim to increase knowledge, awareness and understanding of NF, and will campaign for change in areas they believe will improve the lives of those affected by neurofibromatosis.
  • Connect – The Neuro Foundation aim to take a pivotal role in bringing together groups of people interested in neurofibromatosis to maximise the support and information available to them.
  • Fund – Fund their team of Specialist Advisors and a Telephone Helpline. 

The charity works with the following groups to achieve its mission:

  • Patients
  • Families with neurofibromatosis
  • The Medical community
  • The Neuro Foundation Specialist Advisors
  • The research community (in particular the Neurofibromatosis Medical Advisory Board)
  • Supporters
  • Volunteers
  • Other charities

The charity currently funds a network of six Specialist Advisors, based in Newcastle, Birmingham, Southampton, Plymouth and Leeds. Each Advisor reaches out to over 500 patients a year through: clinics, home visits, a schools advisory service and telephone consultations.

Who to contact

Helpline: (Tuesday & Wednesday only 9am-5pm) 07939046030
Office: 020 8439 1234
Fax: 020 8439 1200

Where to go

1st Floor
44 Coombe Lane
SW20 0LA

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