Since our inception we have went from strength to strength; we were granted charitable status as an independent charity in 1997, and in January 2012 (whilst remaining a registered charity), we changed our unincorporated charitable status to that of a charitable company limited by guarantee.
Over the last twenty years, we have seen major developments within the Niemann-Pick disease world, with advances in technology and increased knowledge and understanding bringing heightened interest and awareness to this group of diseases…which in turn has meant we can do more for the individuals affected by Niemann-Pick! However we do still rely solely on membership fees, voluntary donations, fundraising events and charitable grants for our income. Without this funding we wouldn’t be where we are today. In the video below, NPUK Founder & Former Trustee Jim Green explores both how NPUK came to be and how there are positive signs for the community going forward:
Below you’ll find just a few of our historic dates of which we are so proud…but here’s to hoping there will be many more to come in the future!
Release of NPUK short film, Go Make Memories. The experiences of the individuals and families affected by NPD takes centre stage in this production, which has been developed by Director/Producer Carl Mason and NPUK Communications Officer John Lee Taggart, in direct collaboration with the lovely individuals and families our charity, NPUK, represents.
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...Read more
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...Read more