To support change and improvement in the care and services you receive, Niemann-Pick UK 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 Niemann-Pick diseases. 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 Niemann-Pick 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:
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:
Tel: 0191 415 0693