Welcome to our survey

If you or a member of your family is affected by a rare Lysosomal Storage Disorder (LSD), we would like to invite you to share your experience of the care and services you receive, by participating in the following survey. 

The survey is open to UK patients affected by all LSDs, plus their family members and carers. It is being conducted by the LSD Collaborative, a network of eight UK based patient organisations who have joined together to raise awareness and understanding of LSDs, advance standards of care and enhance the wellbeing of those affected.

The survey will take approximately 20 minutes to complete and will give you the opportunity to share your views, anonymously and in confidence, about the services you receive now, including clinical care, home care and patient advocacy. Your participation will help to influence the future of care and services for patients and their families.

If you have any questions about the survey, please contact:

The UK LSD Collaborative

Email: info@lsdcollaborative.org.uk 

Website: www.lsdcollaborative.org.uk  

Thank you in advance for taking the time to share your valuable insights with us.