Rare Disease Day 29th Feb
Rare Disease Day - 28th February
February 2019 - Research Collaboration
8th/9th June - York - Family Weekend
29th September - Jeans for Genes Day
Co-sponsored with the Orphan Disease Centre (part of the University of Pennsylvania, School of Medicine), Krabbe Uk are cohosting a "Krabbe Think Tank" in London to bring together medical experts from across the rare disease community in Europe. The aim is to share advances in techniques to identify and treat Krabbe Disease
Rare disease day is 28th February 2019 this year. Follow this link for more details.
During February we hope to be able to announce a funding collaboration with Sparks/GOSH on a UK based Krabbe research project following the GOSH research committee recommendations in January.
The 2019 Family Weekend will be held in the beautiful city of York across the weekend of 8th and 9th June.
This years' annual Jeans for Genes day will be held on Friday 29th September 2019.
Fund rasing packs can be obtained by registering here. If you specify Krabbe UK as your chosen charity, 50% of the proceeds are donated to us and 50% to Genetic Disorders UK.