Neurofibromatosis Back to Patient Support Group list
neurofibromatosis

Description

The Association was originally known as P.H.O.N.E., which stands for Patients and Helpers of Neurofibromatosis. The association was subsequently renamed The Neurofibromatosis Association of Ireland. It is a mutual support group with the primary aim of informing suffers and their families of the disorder and letting them know they are not alone with their problem.

Since it's foundation the range of services provided by the association has expanded considerably. In the early years particular focus was placed in publicising the condition and getting the association established. This involved providing information on the condition, creating an awareness of (NF) among the medical profession and giving guidance and support to people with Nf. Gradually Doctors and Consultants became aware of the work of the group and referred suffers to the association.


Services
The following services are provided either on a voluntary capacity or through the assistance of Mary McClelland our Family Support Worker who has been retained on a part-time basis by the association.
  • Family Support / Counselling Service.
  • Response to enquiries from sufferers & their families.
  • House Visitation
  • Liaison service with Hospital / Doctors & other bodies
  • Introduction / referral service to other support groups
  • Information on Learning /Reading difficulties and Exam preparation / Schools
  • Summer Camps
  • Seminars
  • Newsletters
  • Workshops
  • Awareness Programme for the promotion of association services, medical profession, schools and teaching profession, health boards, sufferers and their families
  • Video, booklets and fact sheets
  • Publicity campaigns
  • Information on research
  • Fund-raising activities
  • Attending meetings of associated bodies
  • Liaison with other associations

Contact
Address: The Neurofibromatosis Association of Ireland,
  Carmichael Centre,
  North Brunswick Street,
  Dublin 7.
Tel: 01 - 872 6338
Fax: 01 - 872 5737
Email: nfaireland@eircom.net
Web: www.nfaireland.ie
 

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