During the week of May 28th we had the opportunity of attending the ISSVA 2018 conference. The ISSVA is the International Society for the Study of Vascular Anomalies, an organisation that groups specialists in the field and runs biennial workshops/conferences to share information, innovations and best practices.
The program of the event was very intensive over the entire week. Of particular interest to non-specialists was a full day Primer Course on Tuesday 29th where specialists from around the globe shared information and experiences on a wide range of topics covering diagnostic, treatment options, genetics and more.
On the main event program there were two type of presentations, oral lectures and poster supported presentations on the main floor. On both type of sessions there was plenty of content of interest covering virtually all vascular anomalies and related syndromes. Many of the sessions are extremely technical in nature, we have to remember that the audience for these is specialists in the field. In any case, for any patient reading this it is a good idea to scan read the booklet bookmarked above and find sessions of interest for your specific condition and then ask questions to your specialists about whether any news shared could be of interest to you.
This year there was also, and for the first time at the ISSVA event, activities in the program dedicated to patient support organisations. These included:
- Patient Organisations Course - this was running on Tuesday afternoon and was kindly coordinated by HEVAS. It included sessions on the role of patient organisations in USA, and in the EU within the European Reference Networks (the latter covered by Matt Boltz-Johnson from EURORDIS; and the presentation from 8 different patient organizations from Europe. Shanti Sritharan, Franziska Haiml and Maria Barea attended the session and represented Vascapa.
- Poster Presentations (P154, P155 and P156) covering experiences from organisations in the USA and Europe. HEVAS shared an interesting project where they are trying to create an online patient registry for Infantile Hemangioma (IH) from the perspective of the patients, rather than physicians. You can read more about this on the abstract of session P155 if this is of interest to you.
- An open table area at the event where Patient Organisations could interact directly with the specialists attending the event. Vascapa had a small presence there with one of our members, Juan Lage, covering the table and questions.
In addition to that there was an event on Monday evening organized by VASCERN (the European Reference Networks organization), specifically for the VASCA-WG. The main objective was to, in a relaxed environment, strengthen the contact among doctors from the different Medical Centers of Reference. During dinner, short informative presentations were given to improve information sharing across countries and specialties. Additionally the 4 Patient Organizations active in VASCERN calls were present: it was a great opportunity for our Vascapa members Shanti Sritharan, Franziska Haiml and Maria Barea to create strong links with the other POs representatives, and also interact with doctors.