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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 communications/social media is one of our key strengths, enabling our small community to have access to information, entertainment, and the opportunity to connect with one another in a warm and supportive environment.
  • Our Clinical Nurse Specialist Laura Bell, provides expert care and practical advice, plus home visits whenever necessary – this is incredibly beneficial to families struggling with a Niemann-Pick diagnosis as it often helps to allay anxiety and increase understanding. Genetic counselling and advocacy services are also provided.
  • Our Families Officers Karen Thomas and Steve Neal provide non-clinical advice and information, and also offer an individual advocacy service which includes home visits and assistance at clinic appointments. Having people on the other end of the line to talk to is an essential part of coping positively with a diagnosis, whether you are directly affected or a family member/friend.
  • Promoting relevant research, raising awareness and offering education and information to carers, associated professionals and the general public – there is currently no cure for Niemann-Pick disease, but we live forever in hope for a positive breakthrough.
  • Our Annual Family Conference, comprising of adult and children’s programmes. The Conference is the largest of its kind in Europe, and as a result one of the largest in the world, highlighting the most recent advances in research, and providing 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

16.07.20

Mallinckrodt Pharmaceuticals Statement: Adrabetadex for NPC-1

Please take a moment to read this important announcement from Mallinckrodt Pharmaceuticals in regard to the clinical trial of Adrabetadex for NPC-1. We recognise that this may be a surprising and disappointing development for our community as a whole. Please be assured that we are advocating for further, clearer information and will follow up with our response and next steps shortly.

Sandra Cowie, President, INPDA
Joslyn Crowe, Executive Director, NNPDF
Toni Mathieson, Chief Executive, NPUK

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