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UK LSD Collaborative Survey 2020

If you or your family member(s) receive care and services linked to an ultra-rare disease, such as Gaucher disease, we need your help.

To support change and improvement in the care and services you receive, The Gauchers Association in conjunction with the UK LSD Collaborative, would like to invite you to participate a short, but highly important survey.

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), including Gaucher disease.  Working together, members aim to jointly address shared challenges, to further understanding of LSDs, to advance standards of care and to enhance the wellbeing of those affected.

Taking part in this survey will help us to understand the current status of care and services for patients and families living with Gaucher disease and other ultra-rare 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.

You can participate in the survey in one of the following ways:

  1. On-line via this link:
  2. Complete and return a paper copy – available upon request, email Sarah in the office on
  3. Provide your responses via telephone interview (to arrange contact 01453 549231)

Please return your responses on or before Friday 7th August 2020. Thank you in advance for taking the time to share your valuable insights with us; your contribution will positively impact upon the care and treatment of patients in the future. 

If you would like to discuss this survey or learn more about the UK LSD Collaborative, please contact:

Sarah Allard

01453 549231