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Care and Support

NPUK provides a unique care and support service to families and friends affected by Niemann-Pick disease. The service has been developed over a number of years and is closely monitored to ensure that each activity is of value and benefit to the community we support.

 

Our staff team are available to offer advice and support regarding all aspects of Niemann-Pick disease, to provide reassurance or just a friendly voice at the end of the phone. Some of the services we provide include:

  • A 24-hour helpline – 0191 415 0693
  • Access to advice on all aspects of Niemann-Pick disease
  • Our Clinical Nurse Specialist (Laura Bell) who provides expert care and practical advice, plus home visits whenever necessary
  • Our Families Officer (Louise Metcalfe), and Counselling & Wellbeing Officer (Steve Neal) provide non-clinical advice and information, offering an individual advocacy service which includes home visits and assistance at clinic appointments.
  • An Annual Family Conference providing networking opportunities for families, friends and professionals
  • Regional family meetings, events and fun days throughout the year (some of our past events include trips to Chester Zoo, Longleat Safari Park and Legoland)
  • The organisation of clinic days for children and adults
  • Counselling and advocacy services for individuals, families and friends
  • Bereavement support and counselling

Learn more about ‘Our Care and Support Services’ in our official brochure below, available for download in full here.

Our Care and Support Services (Brochure)

Lads, Dads, and Carers

Information Services

NPUK recognises the need to provide current and relevant information regarding all aspects of Niemann-Pick disease.  We produce a wide range of informative materials and educational resources to assist families, friends and professionals in dealing with all aspects of the Niemann-Pick disease.  These are regularly updated to reflect the changing needs of those we support:

  • Information packs specific to each type of the disease
  • Regular newsletters and e-bulletins
  • Educational information booklets regarding all aspects of Niemann-Pick disease
  • Website hosting information, films and downloadable content and resources
  • Specialist information for health and social care professionals

Supporting and Influencing Research

NPUK’s Board of Trustees is made up of people who have family members or friends directly affected by this group of diseases. We understand the urgency to find effective therapies and the fact that progress never seems to be fast enough. This understanding is at the heart of our research strategy. Facilitating progress towards therapeutic interventions for Niemann-Pick diseases is central to everything we do at NPUK and has been since the organisation formed in 1991.

We actively encourage Niemann-Pick disease research through the relationships we foster and the networks we contribute to. By sharing knowledge and expertise and by working together, we believe progress will be even faster. In addition, we actively pursue opportunities to facilitate research and clinical trials here in the UK.

  • We facilitate the collection of much-needed data regarding clinical aspects of the disease
  • We maintain links with pharmaceutical companies and researchers regarding the development of therapies and treatments for this group of diseases
  • We provide a Trustee Memorial Award for scientific submissions by young professionals showing an interest in Niemann-Pick diseases
  • We collate and distribute current research news and developments
  • We support and encourage Niemann-Pick research by making grants available to laboratories working on this group of diseases

NPUK Annual Family Conference

Every year we hold an Annual Family Conference which offers you the opportunity to hear the latest developments from around the world, with presentations by experts in the field of Niemann-Pick diseases providing an overview of the latest information regarding research, therapies and related care issues, plus breakout sessions and workshops tailored to your needs. It also provides an opportunity to network with other families, friends and professionals from around the world – here is just a small glimpse into the atmosphere that makes it so special:

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