Treatment is evolving all the time, but it helps to understand what best care looks like for XLH. International XLH Alliance, supporting XLH patient groups around the world, has produced this useful summary which you can use to advocate for better care for you or your children.

Now that burosumab is available to children and adults across the UK on the NHS we feature more information about the rollout program and what you need to know if you are starting on burosumab for the first time.

Extra care is needed to ensure that when your child leaves paediatric care, they are properly referred to a specialist adult clinic. A specialist who knows and understands the challenges posed by XLH can play an important role in your care. He or she will be able to help your family get the treatment and the support needed.