Blog Katie Allen November 2023

October was a busy month packed full heading to the Netherlands for the CMTC-OVM Patients’ Advocate Training and the Members’ Conference. I also had the fortunate opportunity to visit The Hague and see the Peace Palace.

It is always exciting to meet other patients and families walking this rare vascular malformation path. The chance to meet people who have your condition and look like you is honestly an opportunity that never gets old and that I will never take for granted after 20 years of feeling alone in my journey.

The Members’ Conference is a great experience for a variety of ages and family members, I took the opportunity to join in in the craft room and make a tea rest. The main conference allowed for many discussions to take place, including allowing parents and adult patients the opportunity to discuss patients’ journeys, doctors sharing new research into medications and treatments, and powerful stories shared. One incredibly important conversation that has been a major topic for the past few years is the transition from pediatric care into the adult medical realm. I can never be more thankful for the opportunity provided by CMTC-OVM to meet up and have these meaningful discussions.