Jan 15, 2021
NICE is currently deciding on who can get access to new treatments like burosumab in England and Wales. To do this, NICE needs more evidence for how XLH affects patients’ lives today. Because it is a rare disease, there is a big gap in our understanding. One way...
Oct 13, 2019
>> Link to Survey << We want to hear from people who have experience of living with inheritable hypophosphatemia’s about what it is like to live with the condition and their experience of current drug treatments and supporting care. Your...
Jan 18, 2017
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...
