@scoop I only attended the patient portion, which is on You Tube:
https://m.youtube.com/watch?v=Pr61jfiR7Q4
I am going for genetic counseling soon so found that discussion particularly interesting and one not covered in a similar depth in prior presentations I have attended. The presenters all had a lot of ground to cover and spoke super quickly so I actually think watching on you tube where you can pause, go back, etc., will be an easier way to digest. I have already re-listened to several of the speakers and plan to re-listen to all of them to make sure I didn’t miss anything. In addition to the genetics discussion, another stand out piece of information came through Linda who attended in person. She learned that in addition to US treating guidelines, which should be coming out first or second quarter of 2025, there will also be simplified and more straightforward standards of care published that those who cannot get to one of the newly designated care centers (1st batch to be announced soon) can take to their local doctors and say “I NEED THIS!”. That seems invaluable and I hope the standards of care come out soon, but apparently will be after the US guidelines are published so maybe later part of the year.