Lipoprotein Lipase Deficiency (LPLD) Community

Meet, discuss & support other patients or families living with Lipoprotein Lipase Deficiency (LPLD). Contribute to topics, or just share what's on your mind

jill
moderator

Urgent! Patient Generated Survey on the Burden of Disease closes midnight 1st May

The FCS Foundation (FCS is the umbrella term for LPLD and its related conditions, https://www.livingwithfcs.org/) has created a survey for anyone living with or caring for someone who has FCS.

Anyone with the condition is welcome to take it, even if receiving drug therapy through a clinical trial.

The end result will be a report that will be published and presented to the FDA, but more exciting will be the ability to use the results to raise more awareness for all of us everywhere.

Time is limited to get your voice heard - the survey closes at midnight on May 1st. Please see the call to the survey from Lindsey Sutton, Co-Founder of FCS Foundation.

Hello FCS Community! Have your voice be heard by the FDA in this patient led survey. You're invited to share your experience living with or caring for someone who has FCS by answering a few questions about the day to day reality of living with this disease. Feedback will be sent to the FDA to compliment the FCS Foundation's recent visit about the patient experience and to help them understand the burden of disease and unmet medical needs of our community.

https://www.surveymonkey.com/r/RG7VTBC

There are 36 questions which can be answered in as much detail as you wish. Please be aware that if you leave the survey your information will be lost and you will need to start again.