Other Organisations

The following other organisations may also be able to offer you help and support.


  • British Acoustic Neuroma Association (BANA): charity supporting people and families affected by acoustic neuroma (vestibular schwannoma).
  • Changing Faces: a charity for people and families whose lives are affected by conditions, marks or scars that alter their appearance.
  • Contact A Family: Charity supporting families of disabled children whatever their disability.
  • Guillain-Barre & Associated Inflammatory Neuropathies (GAIN): support those affected by Guillain-Barré syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and other associated inflammatory neuropathies.
  • Hearing Link: a charity for people with hearing loss and their families.
  • Moebius Research Trust: a Scottish charity that raises awareness of Moebius syndrome and promotes the need for vital research.
  • Saving Faces (The Facial Surgery Research Foundation): founded by a maxillofacial surgeon, Saving Faces aims through education and research to improve the prevention, diagnosis and treatment of facial disfigurement, facial injury and mouth cancer.
  • The Brain Charity – The Brain Charity offers emotional support, practical help, and social activities to anyone with a neurological condition and to their friends, families and carers.
  • The Neuro Foundation: The Neuro Foundation offers support to people affected by NF1 and NF2.

Parent Support Services

  • National Network of Parent Carer Forums: The National Network of Parent Carer Forums is a network of over 150 Parent Carer Forums in England. They are keen to hear from parents whose children are ‘under the radar’ because their children have moderate disabilities and are in mainstream settings.

Patient Support Services

Last reviewed: 01-02-2020    ||    Next review due: 01-08-2020