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!
Orphazyme expects to announce results of full data set for Niemann-Pick disease Type C (NPC) Phase II/III trial in Q1 2019...Read more