The meeting of the Reference Center for Rare Superficial Vascular Anomalies  was held on Thursday June 13, 2024 in the afternoon, in the Viggo Petersen amphitheater at Lariboisière Hospital.
It followed a morning dedicated to the initiation of a French National Diagnosis and Care Protocol (PNDS) for venous malformations. 

Some 32 people attended, including 6 by videoconference. 

Click here to access the program

Professionals and patients from AP-HP and the national network were represented:

- the coordinating reference center at Lariboisière Hospital: administrative and healtcare staff (including the anatomopathology department) and patients (including a student)

- reference and competence centers of Montpellier, Lyon, Toulouse, Lille, Amiens and, by video, Caen and Nancy

-TheUTEP - Transversal Patient Education Unit  

- the FAVA-Multi national health network for rare multisystemic vascular diseases and the VASCERN European Reference Network (ERN)

- a patient Italian illustrator who has produced a book entitled "A story about me".  

- the APHP Communication Department

This first update provided an opportunity to present a number of current initiatives, in particular medical research projects and a Therapeutic Patient Education Program (TPE) for Superficial Vascular Anomalies (SVA). This program has been developed by Dr Julie Malloizel-Delaunay with Dr Virginie Sicre-Gatimel, in cooperation with Dr Annouk Bisdorff-Bresson.

Nearby perspectives include :

- harmonization and consolidation of the national BaMaRa/BNDMR register

- the establishment of a European registry for superficial vascular anomalies, with the launch of the project NARRATIVE: Natural history, quality of life and patient reported outcomes in vascular abnormalities. Coordinated by Dr Baselga Eulalia (Spain), this research project has been selected by the "EJP RDJoint Transnational Call 2023 for Rare Diseases (JTC 2023) ".

- strengthening partnerships with patients and improving medico-social support

In the final session, Sylvie Morel and Delphine Fevre gave an update on patient associations and patient partners. Mrs Fevre presented the new association she created in association with the Dr Bisdorff-Bresson: "Super MAV et moi". The website will soon be available. You can already find the association on Facebook and contact it by e-mail: contact@supermav.fr.

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