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Families Advocate

Since June 2014, The Foundation has provided part funding for the post of Niemann-Pick UK Senior Families Advocate.


This post provides vital, non-clinical support to individuals affected by NP-C, their families, support workers, education providers, employers and relatives. The families officer helps to reduce the feeling of isolation and despair through visiting families at home, and by being available at the end of a phone or via email whenever needed. She acts as an advocate on behalf of the family and give support where needed.

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