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Care & Support

Our main focus, above all else, is to provide unique care and support services to families and friends affected by Niemann-Pick disease (ASMD or NPC). We originally started out as a parent support group made up of ten families affected by Niemann-Pick diseases and 30 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, and Families Officer Louise Metcalfe, we work to ensure that our community feel well supported.

Care & Support

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Latest news

03.04.24

Calling all NPC Patients & Families: your help is needed!

Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help. Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond...

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