The day before the 3rd International XLH Symposium took place in Dublin, we had a meeting of XLH patient groups from around the world, hosted by International XLH Alliance. Oliver Gardiner led several sessions as co-chair of XLH Alliance and trustees Sarah Mitson and Sally Hatton represented XLH UK in the room.
International XLH Alliance is a member organisation which aims to unite and amplify the patient voice by supporting XLH groups worldwide and assists in setting a global standard of care and research for XLH. It now has collaborations with groups in over 20 countries!
We reviewed the 2021 awareness campaign which encouraged us all to ‘access your best care’. We reviewed the standards of best care which have been medically reviewed in Haffner et al., 2019. These have been simplified and beautifully illustrated in the IXLHA poster available here, and we discussed how different patient groups could make their network aware of this, and the supporting document on dentistry best practice.
In the afternoon we had some expert led sessions. The first was to help us understand the complex Health Technology Assessment process which most countries use to determine whether new treatments will be funded, the second was on preparing annual reports.
In the last session of the day we reviewed the results of the international XLH patient survey that was conducted mid-2021, in preparation for its presentation at the XLH Medical Symposium. We discussed the experiences of patients through this and our own experiences and confirmed some key findings
- Patients are very clear they want a coordinated response across the relevant disciplines to XLH-related tests, to improve care and reduce impact on family life
- Early diagnosis is a priority, as is funding and availability of the latest treatments
As Sally Hatton commented:
“It is so important to meet other people in the XLH community and understand how healthcare systems in different countries work towards providing best care. We came away inspired with new ideas for XLH UK and keen to share more with you both online and at the next UK Family Day.”