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UK Specialist Centres

Specialist care centres can provide comprehensive, integrated, multidisciplinary care for patients, as well as information and support for family members. They aim to incorporate networks of all relevant medical disciplines within the core team.  They have effective links with national networks of testing laboratories and other care centres at a national and international level.

Specialist nurses play a vital role in the day-to-day running of clinics and deal with many of the familial aspects of work with patients and family members. Physical therapists, speech therapists, occupational therapists and disease counsellors should also all be involved in supportive care for patients.

Everyone affected by Niemann-Pick disease in England is entitled to receive their clinical care at a Specialist Centre: 

Adult Niemann-Pick Disease Patient Centres:

Paediatric Niemann-Pick Disease Patient Centres:

Scotland, Wales and Northern Ireland:

Arrangements are in place for patients from Scotland, Wales and Northern Ireland to be seen within the designated centres in England for diagnosis and clinical management.  Decisions on funding treatment/access remain with the patient’s local health authority:

For further information visit the NHS Specialised Service Website.

specialist

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.

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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.

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