Can you spare 10 mins to help with a su... - Cystinuria Support

Cystinuria Support

Can you spare 10 mins to help with a survey?

MattBultitude profile image
MattBultitudeAdministrator
4 Replies

There is a new Rare Disease survey (The H-Care Survey) which we invite patients and their families with cystinuria to complete. It takes about 10 minutes and will help to understand the experiences of patients living with rare disease and allow comparison between different countries. In turn this might lead to more funding for rare diseases. Please remember to accurately select the hospital you are treated in as this allows those departments to get feedback on the results.The survey is open until 29th February 2020.

For more information and a link to start the survey: eurordis.org/guidelines_hca...

Thanks and Happy New Year.

Matt and Kay

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MattBultitude
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4 Replies
AFCWombles profile image
AFCWomblesAdministrator

Done!

KaThomas profile image
KaThomas

Please can everyone complete this so that we can raise awareness of rare diseases which will help with future funding for new treatments.

neilsss profile image
neilsssAdministrator

Done! Do we win Avios??

APdesigns profile image
APdesigns

Done

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