**Closing date extended to 28th August 2020**

Posted On: 09/07/2020

If you or your family member(s) receive NHS care and services for Pompe disease, we need your help.

To support change and improvement in the care and services you receive, the Pompe Support Network, in conjunction with the UK LSD Collaborative, would like to invite you to participate a short, but very important survey.

The UK LSD Collaborative is a group of nine UK patient organisations representing those affected by over 70 rare and ultra-rare Lysosomal Storage Disorders (LSDs), including Pompe 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 Pompe and other ultra-rare diseases. The survey should only take about 20 minutes to complete and gives you the opportunity to share your views anonymously and in confidence.

The results of the survey will be collated in an anonymised report that will be presented to NHS Commissioners, LSD 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 participating patient organisations and their communities.

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

1. Online via this link:

2. Complete and return a paper copy – please contact us for a printed copy

3. Provide your responses via telephone interview - please contact us to arrange a time

Please complete and return your responses on or before Friday 28th 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:

: Pompe Support Network


: Tel 07950 646265 or 07886 847698