Last week, there was a symposium on XLH in Paris for medical researchers and clinicians to learn and share their experiences. It was organized jointly by the RVRH-XLH patients' association and the Reference Center for Rare Disorders of the Calcium and Phosphorus Metabolism, https://sites.google.com/site/cdrpariscalciumphosphore/home , with help from other medical-professional groups.
Two of our Scientific Advisory Board Members, Thomas Carpenter and Carolyn Macica spoke at the event. You can see the full agenda here: http://www.rvrh.fr/spip.php?article54
One of the Network's directors, Oliver Gardiner, was there to represent our patient community. He reports that the conference was hugely successful, with over one hundred medical professionals attending from over 23 countries in order to discuss research and developments related to XLH and ADHR.
You can see a picture from the event at our official facebook page, facebook.com/XLHNetwork. It shows Oliver with the UK medical professionals who attended the event.