Aged between 13-17, 18-25, 26+?

Do you live in Finland, Ireland, France or the UK? And fall into these age categories 13-17, 18-25, 26+? Then, please read on because your input will influence the care for adults across Europe.

This is the now the time to focus on the possibilities of new treatment for adults. You’ll all remember how important the ‘burden of illness’ studies can be because the healthcare assessors and decision makers across Europe need to understand what the quality of life is currently like for adults and their families living with XLH. In order to get a better understanding a lot more data is required which is why the company behind the new treatments are working with the medical research company (Acaster Lloyd) to collect this important data. We need no more than 1 hour of your time over a private telephone interview in exchange for a €30/£30 Amazon voucher. In order to participate, you must 1) be 13 years or over. 2) Have an XLH diagnosis. 3) Live in one of the following countries: Finland, Ireland, France, (French speaking Belgians) or the UK. Your participation will remain confidential and only anonymised data would be used for analysis and in their reports. This research is conducted by Acaster Lloyd Consulting, an independent research consultancy on behalf of Kyowa Kirin International. If you are interested in taking part or have questions about the research, please do email: