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Have your say to improve services for ultra-rare diseases


If you are affected by an ultra-rare disease we need your help to make support change and improve your care and services.

In conjunction with the UK LSD Collaborative, we would like to invite you to participate in a short, but highly important survey to understand the current status of care and services for patients and families living with MPS, Fabry and related diseases. The survey will take approximately 20 minutes to complete and will give you the opportunity to share your views, anonymously and in confidence.

The results of the survey will inform an anonymous report that will be presented to NHS England, Specialist Centres, Home Care providers and other relevant stakeholders, with the aim of influencing change and improvement to future service provision. The report will also be shared with patient organisations, patients and their families.

The UK LSD Collaborative is comprised of nine UK patient organisations representing those affected by over 70 rare and ultra-rare Lysosomal Storage Disorders (LSDs). Working together, members aim to jointly address shared challenges, to further understanding of LSDs, to advance standards of care and to enhance the well-being of those affected.

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