The Hereditary Hemorrhagic Telangiectasia Working Group (HHT-WG) held its spring meeting in Copenhagen, Denmark on 26th May 2023. After a successful BEE meeting, the group was ready to discuss the latest updates in their collaborative work as VASCERN members and to share knowledge.
The meeting started with an introduction by Dr. Sophie Dupuis-Girod (HHT-WG Co-Chair), who welcomed the attendees and set the tone for the productive discussions that followed. The minutes of the previous meeting were approved by all.
A major topic of discussion was the developing centers for HHT and the specific characteristics and organisation needed. This session highlighted the key considerations required for a centre to be approved as an HHT developing center in VASCERN. This was followed by a session on the CIROCO HHT Registry.
There was an in-depth discussion on new Do’s and Don’ts topics. The Do’s and Don’ts Factsheets include expert recommendations to help patients and the medical community be informed about the basic do’s and don’ts of common and emergency situations that should be considered in patients with rare vascular diseases. Other innovative ideas to empower HHT patients and improve their quality of life were also shared. These include the development of a booklet for teenagers and the integration of a quiz into the e-learning module.
The group launched a contraception questionnaire to collect information from HHT patients about sexuality, contraception and family planning. There was an open discussion about the results and next steps with the data collected. Julie Hallac (VASCERN Project Manager) then gave an update on VASCERN and encouraged attendees to give feedback on the HCP evaluation process (AMEQUIS).
Gloria Somalo (VASCERN Education & Scientific Officer) presented new updates on the upcoming Summer School. The Summer School aims to teach medical students and interns about rare vascular diseases. The group actively discussed next steps and future endeavors, including the progress and next steps for her article on bevacizumab, as well as the evaluation of the BEE meeting. The discussion of clinical cases was not left out either.
The HHT Spring Meeting was a resounding success, fostering collaboration and knowledge sharing. We look forward to new outcomes from the group.