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What We Do

How We Help

We make a positive difference to the lives of those affected by Niemann-Pick disease, through:

  • Providing support and information regarding all aspects of Niemann-Pick disease, via a 24-hour help line, educational literature, our website, regular newsletters and e-bulletins.
  • Our Clinical Nurse Specialist who provides expert care and practical advice, plus home visits whenever necessary. Genetic counselling and advocacy services are also provided.
  • Our Families Officer who provides non-clinical advice and information, offering an individual advocacy service which includes home visits and assistance at clinic appointments.
  • Promoting relevant research, raising awareness and offering education and information to carers, associated professionals and the general public.
  • Our Annual Family Conference, comprising of adult and children’s programmes. The Conference highlights the most recent advances in research, and provides an ideal opportunity to strengthen our family support network.

Watch the video below to see first-hand accounts of our impact on our community, and find out more by visiting our ‘Care and Support’ pages, here.

Latest news

31.10.19

Cyclo Therapeutics Announces Its Publication of the Most Extensive Set of Case Study Reports To-date on Expanded Access Use of Hydroxypropyl Beta Cyclodextrin in Niemann-Pick Disease Type C

Publication describes favorable safety profile and efficacy in neurologic and other disease features in individual NPC patients following intravenous administration of drug...

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22.10.19

Cyclo Therapeutics Announces Completion of Enrollment in its Phase I Trial to Evaluate Trappsol® Cyclo™ for the Treatment of Niemann-Pick Disease Type C

GAINESVILLE, FL – (Businesswire) – October 22, 2019 – Cyclo Therapeutics, Inc. (OTCQB: CTDH), formerly CTD Holdings, Inc., a biotechnology company that develops cyclodextrin-based products for the treatment of disease, today announced that it has completed patient enrollment in its Phase I trial to evaluate the safety and tolerability of Trappsol® Cyclo™ administered intravenously to Niemann-Pick Disease Type C (NPC) patients.

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