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