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Working as a group for LSDs

A UK charity network for lysosomal storage disorders (LSDs)

Sharing information
The collaborative is in constant contact
New members
The collaborative continues to grow with new members
Working together
The collaborative undertakes many projects together

about

Raising the awareness of Lysosomal Storage Disorders

The UK LSD Patient Collaborative Group is comprised of patient organisations representing those affected by Lysosomal Storage Disorders (LSDs). 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 group is made up of representatives from various charities in the UK who provide support and information to families affected by different LSDs.

objectives

One voice for LSDs

Working together to influence national policy, stimulate interest in, and further the knowledge and understanding of, Lysosomal Storage Disorders.

Promote clinical efficiency

The implementation of a well-organised campaign to highlight the need for effective, accessible and safe therapies for LSDs and better need for health and social care.

Sharing information

Working in partnership to raise awareness of LSDs amongst health and social care professionals and the general public.

mission

To provide an understanding of Lysosomal Storage Disorders

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.

aims

Create action plan

Work alongside Commissioners to improve clinical standards of care for those affected by LSDs through Clinical Reference Groups (CRG) and Expert Advisory Group for LSDs.

Bring families together

Enable families affected by LSDs to have a point of contact with specialist charities and others affected similar conditions.

Raise awareness

Bring to the attention LSDs and their charities to the general public to promote the work they do.

members

Charity members of the UK LSD Patient Collaborative

Click on the charity name for more information



projects

The projects completed by the UK LSD Patient Collaborative

Click on each project for more information

contact

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