Thank you for donating!

You can donate using the following services.

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

Support us

Latest news

24.05.19

CTD Announces Home-Based Dosing of First Patient in US Extension Protocol of Clinical Trial using Intravenous Administration of Trappsol® Cyclo™ for Niemann-Pick Disease Type C

ALACHUA, FL – (Accesswire) – May 23, 2019 – CTD Holdings, Inc. (OTCQB: CTDH), a clinical stage biotechnology company that develops cyclodextrin-based products for the treatment of disease with unmet medical need, today announced its first home-based infusion of its proprietary formulation of hydroxypropyl beta cyclodextrin, Trappsol® Cyclo™, in a formal clinical trial. The trial is “An Open-Label Extension Study of the Long-Term Safety and Efficacy of Intravenous Trappsol® Cyclo™ (HPBCD) in Patients with Niemann-Pick Disease Type C (NPC-1)” (ClinicalTrials.gov NCT03893071) in the United States.

Read more

13.05.19

Professional Delegate Interactive Workshop and Conference Registration Form - 2019

NPUK INTERACTIVE WORKSHOP - REGISTER NOW! For all health professionals, clinicians and pharma reps who want to join us for the Interactive Workshop this form is for you, please register by the 6th September.

Read more
View all news Subscribe