Cystagon / Procysbi Survey

July 26, 2024 | Posted by Tom Kenning

Do you have experience of cystagon (mercaptamine), procysbi (cysteamine bitartrate), or both?

Take part in our questionnaire to help decision-makers understand the impact cystinosis and its treatment has on the day-to-day quality of life of people living with cystinosis, as well as their parents and carers. Anyone living with or caring for someone with cystinosis can participate, irrespective of where you live.

Not a fan of online questionnaires? No problem. Contact Metabolic Support UK by calling 0845 241 2173 to complete the questions over the phone or request a paper version (EU only).

Your answers will be treated confidentially. This questionnaire will close on Sunday the 8th of September 2024.

Visit https://tinyurl.com/CystinosisTreatment to complete the survey and receive an Amazon voucher worth £25 (UK participants only).

Our work on this project is in collaboration with Kidney Research UK, the leading kidney research charity in the UK, which is on a mission to end kidney disease, and Metabolic Support UK, the leading organisation for those affected by Inherited Metabolic Disorders (IMDs).

A grant was received from Chiesi Ltd to support this project.

A text heavy asset, starting “We need your voice!” and a graphic of a woman pointing at a bubble of text. All text and more is included in the caption. Across the bottom sits the Cystinosis Foundation UK, Kidney Research UK, and Metabolic Support UK logos above the statement “A grant was received from Chiesi Ltd to support this project”.