The UK LSD Patient Collaborative
Collaborating for a better future
EST.2009
Who We Are
The UK LSD Patient Collaborative Group is comprised of patient organisations representing those affected by Lysosomal Storage Disorders (LSDs). We have joined together to form an action group to advocate and work on behalf of LSD patients and their families in the UK. The group is made up of representatives from 7 charities in the UK who provide support and information to patients and families affected by different LSDs. Together we represent over 70 rare and ultra rare diseases and almost 2500 patients and their families.
The UK LSD Patient Collaborative
Our mission statement
To undertake joint promotion and a shared understanding of LSDs, to advance standards of care and to enhance the health and wellbeing of those affected. To stimulate interest and work in partnership to establish a forum in which members can discuss together matters of common interest, and contribute to the development and dissemination of good practice amongst them.
Campaigning
We campaign for the LSD community to have access to better healthcare in the UK.
Support
We support a range of LSDs and have extensive experience in this field.
Consulting
As a collaborative we consult on the hot topics impacting our disease community.
Development
Together we develop strategies that utilize our strengths as a collaborative.
Charity members
The members of the UK LSD Patient Collaborative work on various projects that can impact the LSD community,
Meet our charity representatives
charity members
Diseases represented
Patients and families supported
new LSD diagnoses a month
What is a Lysosomal Storage Disorder (LSD)?
Lysosomal storage diseases are inherited metabolic diseases that are characterized by an abnormal build-up of various toxic materials in the body’s cells because of enzyme deficiencies. There are more than 70 of these disorders altogether, and they may affect different parts of the body, including the skeleton, brain, skin, heart, and central nervous system. New lysosomal storage disorders continue to be identified. While clinical trials are in progress on possible treatments for some of these diseases, there is currently no approved treatment for many of the lysosomal storage diseases.
Latest News
Projects Officer – 20 hours a week at £17.50 per hour, home based working with some office visits The International Gaucher Alliance, a global umbrella group representing over 85% of the global Gaucher community is seeking two new posts to join the team. The post holder will be responsible for the implementation and development of...
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This webinar has been organised by patient organisations working in the field of Inherited Metabolic Diseases (IMD). We have realised from talking to IMD patients and families that there is some confusion about the COVID-19 vaccines. This webinar will bring together an expert panel to address questions and concerns relating to the vaccines, addressing misconceptions...
Read More The following webinar focuses on how those affected by inherited metabolic diseases may be impacted by the recent coronavirus (COVID-19) outbreak.
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This unique collaborative approach between the charities makes such a different to all the patients and families they support.