Awareness
Awareness
Krabbe UK are active participants in MetabERN a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border.
Learn more about MetaBERN - https://metab.ern-net.eu
Krabbe UK are members of the UK LSD Collaborative where we and other patient organisations representing those affected by Lysosomal Storage Disorders (LSDs) work together to influence national policy, stimulate interest in, and further the knowledge and understanding of LSDs
Learn more about the LSD collaborative - http://lsdcollaborative.org.uk
Training
Krabbe UK aim to raise awareness of Krabbe leukodystrophy amongst health and social care professionals and the general public in the UK.
Collaboration
Krabbe UK are in regular contact with other organisations and patient organisations across the globe who have an interest in Krabbe disease. Details of these organisations can be found in the useful links section of the website.