We were delighted to welcome almost 50 people to our Family Day at The Macdonald Manchester Hotel. From Jim’s engaging session on ‘Living with XLH’ to Adrian’s discussion about PIP, the information was helpful throughout. Oliver provided a brief overview for new medication approval processes across the UK and explained about the importance of adding the audience’s feedback to active surveys. After a presentation to Leo’s Mission – who have been amazing supporters of XLH UK in raising awareness and funds – we opened the room for lunch and for the children to enjoy the face-painting and balloons.
“I had never met anyone else with XLH before and comparing experiences and chatting with others who also have it has been amazing”