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Care & 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 & Support

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Latest news

04.04.20

"Time to Talk" (Virtual Elevenses - Webinar Series)

At this time of social distancing, it has never been more important to stay in touch. Being able to see each other’s faces and to reach out virtually to those we love and miss is essential. This virus may be isolating us but it is also uniting us – more than ever, we are in this together. We are vulnerable together, anxious together, sad together, scared together, and – most importantly - hopeful...

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27.03.20

A message from Orphazyme to the global community of patients, family members and healthcare providers impacted by the corona virus pandemic (COVID-19):

In the days and weeks to come, Orphazyme will continue to communicate openly with patient organizations and clinical trial investigators around the globe to share the latest information regarding our efforts as the situation develops. Meanwhile please utilize attached FAQs to answer questions if any about our trials...

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