Hey there! I’m just sharing the link to the recent webinar that took place that featured many of the top doctors in the field who are focusing on this condition. Names include dr hui, dr hepworth, dr higgins, etc. This Webinar is loaded with information about the current status of research and what it’ll take to keep things moving, the different presentations of the vascular nature of this condition, why it affects some and not others, etc.
The more awareness this gets, the better it is for this committees goal. These doctors are incredible people and they’re working hard to get better treatment for all of us.
I think one very important part is that they are seeking to get the condition recognized and added on the ICD list.
That means, it won’t be “it’s just in your head, it doesn’t exist, nobody knows it” anymore.
Very educational. Thank you.
Thank you for posting the link, @Msdstc. I should have thought to do that. The webinar discussion will be helpful for many of our members.
@Buzz Believe this is Dr. Higgins in this video.
@Msdstc thank you for posting this. Very helpful and encouraging to see doctors that care about the “why” and all possible treatment options.
I just watched this two days ago. It’s great to see these doctors collaborating to determine better ways of measuring and diagnosing as well as adding ICD codes.
Do you know the codes they link this to