Charity supporters of students4rarediseases group
The students4rarediseases group are supported by the UK LSD Patient Collaborative Group. The UK LSD Patient Collaborative Group is comprised of patient organisations representing those affected by Lysosomal Storage Disorders (LSDs) and they have joined together to form a new action group to work and lobby on behalf of LSD patients and their families in the UK.
The UK LSD Patient Collaborative Group undertakes joint promotion and a shared understanding of LSDs. The group works together to advance standards of care and to enhance the wellbeing of those affected by LSDs. The collaborative also stimulates interest and works 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 amongst them.
The charity members of the UK LSD Patient Collaborative Group are:
- The Cure & Action for Tay-Sachs (CATS) Foundation – supports families affected by Tay-Sachs and Sandhoff disease
- The Gauchers Association – supports families affected by Gauchers
- The Society for Mucopolysaccharide Diseases (MPS Society) – supports families affected by MPS and related Lysosomal Storage Diseases
- The Association for Glycogen Storage Disease (UK) – supports families affected by Glycogen Storage Diseases
- Batten Disease Family Association – supports families affected by Batten disease
- The Niemann-Pick Disease Group (UK) – supports families affected by Niemann-Pick
- Save Babies Through Screening Foundation UK – supports families affected by Krabbe Leukodystrophy and other genetically inherited rare diseases