Niemann-Pick UK (NPUK) is a proud member of the UK LSD Collaborative, a small charity comprising seven patient organisations representing individuals and families affected by lysosomal storage disorders (LSDs) in the UK, including Niemann-Pick diseases. By joining forces, the collaborative creates a unified voice to advocate for over 70 rare and ultra-rare LSDs, supporting nearly 2,500 patients and their families across the country.
About the UK LSD Collaborative
The UK LSD Collaborative brings together patient organisations dedicated to supporting those affected by LSDs, a group of rare inherited metabolic disorders caused by enzyme deficiencies that lead to the toxic build-up of materials in the body’s cells. These disorders, including Niemann-Pick diseases, Gaucher disease, Fabry disease, and mucopolysaccharidoses, can affect multiple systems such as the brain, heart, skeleton, and nervous system. By working collaboratively rather than as individual groups, the UK LSD Collaborative amplifies its impact through a shared mission to:
Promote Joint Advocacy: Undertake collective efforts to raise awareness and understanding of LSDs among healthcare professionals, policymakers, and the public.
Advance Standards of Care: Develop and disseminate best practices to improve diagnosis, treatment, and support for LSD patients.
Enhance Wellbeing: Foster initiatives that improve the health and wellbeing of those affected by LSDs and their families.
Stimulate Collaboration: Establish a forum for member organisations to discuss common challenges, share ideas, and drive progress together.
The collaborative focuses on the similarities between member organisations, such as NPUK, rather than their differences, to prioritise shared progress for the LSD community.
Our Contribution to the Collaborative
As a member, NPUK plays an active role in the UK LSD Collaborative by:
Representing the Niemann-Pick community within the broader LSD landscape, ensuring their specific needs are addressed.
Sharing expertise from our research and patient support programmes to strengthen collaborative initiatives.
Contributing to joint advocacy efforts to secure better healthcare policies, funding, and access to clinical trials.
Supporting the collaborative’s mission to provide practical and emotional support to patients and families, particularly during challenging times.
Impact of the UK LSD Collaborative
The collaborative’s strength lies in its ability to unite patient organisations to achieve greater impact together. Key achievements include:
Promoting research into innovative treatments, such as enzyme replacement therapy, gene therapy, and substrate reduction therapy.
Creating a stronger, unified voice to advocate for improved healthcare services and policies for LSD patients.
Raising awareness of LSDs to support earlier diagnosis and intervention.
Enhancing support for nearly 2,500 patients and their families through shared resources and community-building initiatives.
Our Head of Communications John Lee Taggart accepts the Gold award (Longform under £100,000) at the Smiley Charity Film Awards 2024 for A Rare Find on behalf of the UK LSD Collaborative
Get Involved
The UK LSD Collaborative thrives on the dedication of its member organisations and the support of the wider community. You can contribute to this vital work by:
Learning More: Visit the UK LSD Collaborative website or follow them on social media to explore their projects and resources.
Connecting with NPUK: Contact us at info@npuk.org to learn how you can support our work within the collaborative.
Spreading Awareness: Share information about LSDs and the collaborative’s mission to build a more informed and supportive society.
Together, through our partnership with the UK LSD Collaborative, we are working to empower the LSD community, improve access to care, and drive progress towards better treatments and cures.
For more information about the UK LSD Collaborative or to collaborate with us, please reach out to info@npuk.org.
