UK Lysosomal Storage Disorder (LSD) Patient Organization Collaborative

Save Babies Through Screening Foundation is a member of the UK LSD Patient Collaborative. Membership of this group is open to UK Patient associations working to support those affected by LSDs who are a registered charity in the UK and who are independently governed in the UK.

Our mission and objectives is to undertake joint promotion and a shared understanding of LSDs, to advance standards of care and to enhance the wellbeing of those affected; to enable the development of a stronger voice with which to influence national policy, stimulate interest in and further the knowledge and understanding of LSDs; to oversee the provision of clinical care for those affected by LSDs, to promote clinical efficiency and best practices in the health services; to work in partnership to establish a forum in which members can discuss matters of common interest and contribute to the development and dissemination of good practice.

Current members are:

• Association for Glycogen Storage Disease UK

• Batten Disease Family Association

• Gauchers Association

• MPS Society Niemann-Pick Disease Group UK

• Save Babies Through Screening Foundation UK (representing Krabbe Leukodystrophy)