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Care & Support

Our main focus, above all else, is to provide unique care and support services to families affected by Niemann-Pick diseases. We originally started out as a parent support group made up of ten families affected by Niemann-Pick disease and over 25 years later we stand stronger than ever.

Since 1991 we have continually developed our service so we can better serve those who need it most. Many of the individuals who work within the charity have been directly affected by Niemann-Pick in their personal lives, which adds a unity and shared-understanding of the potential struggles and subsequent help you may need.

Through the dedicated work of our Care and Support team, which consists of Clinical Nurse Specialist Laura Bell, Families Officer Karen Thomas, and Project Families Officer Steve Neal, we work to ensure that our community feel well supported.

Care & Support

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Latest news

16.07.20

Mallinckrodt Pharmaceuticals Statement: Adrabetadex for NPC-1

Please take a moment to read this important announcement from Mallinckrodt Pharmaceuticals in regard to the clinical trial of Adrabetadex for NPC-1. We recognise that this may be a surprising and disappointing development for our community as a whole. Please be assured that we are advocating for further, clearer information and will follow up with our response and next steps shortly.

Sandra Cowie, President, INPDA
Joslyn Crowe, Executive Director, NNPDF
Toni Mathieson, Chief Executive, NPUK

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