The Global Genes Rare Patient Advocacy Summit is happening in California tomorrow and Friday (September 22-23). You can register for the livestream here: https://globalgenes.org/2016livestream/ If you can't watch them live, they'll be available afterwards to watch in the archives.
To get an idea of what the event is like, check out the previous years' archives here: https://globalgenes.org/pastsummits/
There are a lot of great topics scheduled for this year's event. One that stood out as particularly relevent to the XLH community is on transitioning care from pediatric to adult healthcare providers.
Global Genes is one of the leading rare disease patient advocacy organizations, and it works to build awareness, educate the global community and provide critical connections and resources that equip advocates to become activists for their disease.