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Care and 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 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 NPUK Clinical Nurse Specialist Laura Bell, NPUK Senior Families Advocate Elizabeth Davenport, and NPUK Project Families Officer Steve Neal, we work to ensure that our community feel well supported.

Care and Support

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Latest news

11.01.19

CTD Announces Presentation at Upcoming Conference on Lysosomal Storage Diseases

CTD Holdings: Annual conference offers opportunities for academic researchers and industry representatives to exchange information on novel therapeutic interventions...

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08.01.19

Sanofi Genzyme: ASCEND and ASCEND-Peds Studies Complete Enrollment

Sanofi Genzyme’s Global Project Team would like to announce that our pivotal registration study (ASCEND Study) for adult patients with chronic, systemic acid sphingomyelinase deficiency (ASMD) Types B and A/B (or intermediate type) and our pediatric study (ASCEND-Peds) also treating Type B and A/B ASMD pediatric patients have successfully completed enrollment for the targeted number of patients for each of these trials...

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