Year 2023 in review

The year 2023 has been full of activities and actions, that we have either conducted on our own or in partnership with national and European patient organisations (Like RaDiOrg, VPP, LUSS and EURORDIS), within VASCERN (the European Reference Network for Rare Vascular Diseases) and in particular within the VASCA-WG (Vascular Anomalies Working Group).
Through all these actions, we aim to drive to faster and proper diagnosis of vascular anomalies, help and support people affected by these rare diseases, improve their life and possibilities of treatments, make these diseases more relevant within the national and european level.

Here is a chronological list of activities: 


  • Jan 20 - 21: we assisted, together with other patient representatives and organized by the 101 Foundation, to the VASCERN ePAG conference in Ghent, where doctors from the team of Prof Bart Loeys explained their advances on Marfan’s genetic research and Romain Alderweireldt presented the establishment, goals and progression of the 101 Foundation.
  • Jan 30 - Feb 01: during the VASCA winter days and together with another patient representative, we continued to give the patient perspective into the VASCA Working group projects and presented the action plan that is being done by the patient representatives group.
  • Jan 31 - Feb 3: the VAC2023 took place in Brussels. This was the first ever congress bringing together fundamental researchers and clinicians dedicated to vascular anomalies. It was the conclusion of the V.A. Cure project: a project aimed to develop new therapies for vascular anomalies, an EU-MSCA-ITN project that started on 1 March 2019 and to which VASCAPA contributed. During the VAC2023 congress we had the honour to present the challenges of people living with a vascular anomaly, aiming to sensibilize and motivate research and doctors, so jointly they can come up with new and better treatments for patients. We also facilitated, together with our sister patient organisation from The Netherlands -HEVAS- and an HHT patient (Hereditary haemorrhagic telangiectasia), five videos showcasing specific challenges and difficulties patients confront in their life. The talk and videos were highly appreciated by all as it helped to set a clear purpose into their work.



  • Feb 16: we attended the Prix Generet ceremony, where Prof. Vikkula (the first laureate of this outstanding Belgian award) presented his work together with the testimonial of a patient. The Fund Generet aims to recognize and empower established researchers to develop a high-level project in the field of rare diseases to better understand the processes (causes and mechanisms) underpinning rare diseases and translating fundamental discoveries into better prevention, diagnosis or treatment for patients. It started in 2018 and it is granted yearly with now 5 laureates.
  • Feb 28: we participated in the global and Belgian campaigns for Rare Disease Day, organised respectively by EURORDIS and RaDiOrg, illuminating our homes (and our neighbors’) with the campaign colors, and discussing our common challenges about living with a rare disease in the Colored cafe in Brussels.



  • April 19 - 21: we attended the ISSVA (International Society for the Study of Vascular Anomalies), which is the international meeting where latest discoverings and major learnings are shared among specialized doctors. For the patient organisations, this year’s edition had a special relevance as there was a full session on how we can participate in a more relevant way into this outstanding society. We have high expectations for the future!
  • April 21: our patient representative in VASCERN participated in the first VASCERN ePAG Spring meeting: the opportunity to strengthen the network of Patient Organisation representatives in our European Reference Network, and define how to further strengthen our future deliverables.
  • April 24: we had an initial and informal discussion with Novartis, to understand how they can further help patients living with a vascular anomaly. This is very important for us, as Novartis is the maker of Alpelisib, a drug being studied for certain patients affected by a PIK3CA mutation.



  • May: as part of the VASCA WG team, we participated in the project proposal for the EJP RD Joint Transnational Call. The objective is the study of vascular anomalies, to be conducted across several of the medical centers that are part of VASCA-WG. VASCAPA role would be collaborating to help with the communications with the patient community, share the status and results of the project and also to develop a patient journey reflecting how the life of people living with an arteriovenous malformation evolves. (sneak peek: the project has been granted!!)



  • June 3: we attended the General Assembly of RaDiOrg to learn of the organisation’s activities during 2022, and their exciting plans for 2023.
  • June 17: the yearly annual General assembly of VASCAPA took place. The group of effective members was joined by some fantastic adherent members that have started to participate and help in our activities. Great news for us all!!!
  • June and months before: we participated in the survey led by RaDiOrg, LUSS and VPP to understand the challenges people living with rare diseases in Belgium confront when interacting with their mutuelles and the INAMI. This resulted in a report and recommendations that LUSS and RaDiOrg presented to the federal Healthcare minister (Cabinet of Minister Vandenbroucke) on June 21.



  • Aug 28 - 29: the VASCA Networking event. While normally there is only one representative from each hospital in the VASCA working group meetings, this time several doctors from each hospital were able to join. It was yet another opportunity to see the relevance of a multidisciplinary team, and how networking across the different specialisations can create even better results for the patients: creation of guidelines, sharing of expertise across each function (like radiologies, surgeons, geneticists, …)



  • Sept 6: meeting the Hyloris pharmaceutical company, who can do alternative developments of drugs. We will further explore the possibility of working on a promising treatment for a certain vascular anomaly. Fingers crossed that this could lead, in some years from now, to a good option for patients!
  • Sept 9: VASCAPA Day 2023. A great afternoon to meet and candidly talk among patients and families. Once again we were fortunate to have doctors from the Vascular Anomaly Center of Cliniques Universitaires Saint Luc, who presented very relevant information and stayed to have open discussions with the participants. We are looking forward to our VASCAPA day 2024!!



  • October 5 - 6: participation in the VASCERN Days 2023. The annual meeting where representatives from the hospitals and patient organisations that belong to VASCERN meet to discuss the progress and news of this European reference network. The different rare disease working groups and the group of patient representatives share their status and progress. There are also specific working sessions where each team can work on their strategy and to advance on their deliverables. This year a psychology transversal group was created to study and later address the patient and care needs; while the work continues for the groups on pregnancy and registries.



  • Nov: we participated in the survey to explore the added value of patient associations in healthcare in Belgium. This effort comes in response to a request letter led by the Patient Expert Center, RaDiOrg and VPP, that was signed by many patient organisations and addressed on 30 September 2022 to the Minister Vandenbroucke, calling for greater support for patient associations. We will know on Dec 21 the outcome of the survey and the next steps.
  • Nov: we submitted, jointly with the team of the Center for Vascular Malformations of Cliniques Universitaires Saint Luc, a nomination for Prof. Laurence Boon for the Edelweiss Award for healthcare professionals. This prize, organised by RaDiOrg (the national alliance for rare diseases), aims to recognize outstanding patients, health professionals, media and projects from patient organisations in the field of rare diseases. It also aims to give visibility to rare diseases together with the usual stakeholders, by inviting regional and national health authorities. In the nomination of Prof Boon, we tried to show her amazing carriere and attitude, and her impact on the care improvement for patients in Belgium, Europe and worldwide.



  • Dec: great news!!! Remember the project proposal submitted in May by the VASCA-WG to the EJP RD? Well, it has been granted and will be funded!! this project will help to advance fundamental knowledge on vascular anomalies! Stay tuned as more news will come in the future.
  • December 5: More great news! During the Edelweiss awards, Prof. Laurence Boon received recognition as an exceptional healthcare provider. According to RaDiOrg, "for her exemplary commitment to patients with vascular anomalies, both in terms of the organization of healthcare and her commitment to networking, research, and collaboration with patients." In addition to this extremely well-deserved recognition, this award helps raise awareness of vascular anomalies.
  • Dec 7: in an extraordinary General assembly, the effective members approved the revision to the asbl statutes to address the new legal requirements. We profited to reflect on the future of our work, and of course had a very nice chat together.
  • Dec 13: we met with a representative of VPP (the Vlaams Patienten Platform, Platform for flemish patients) to share the needs of the people living with vascular anomalies. This is part of deep study the VPP is doing to define their 5 years priorities and action plan.


During the year 2023

  • We have been working, together with other European patient organisations, on the next issue of the VASCA Magazine, expected for spring 2024. It will compile articles on specific vascular anomalies, genetics, research, treatments and patient organisations, as well as several testimonials from inspiring patients.
  • Thanks to your strong participation, we have enough answers to be able to analyse the Rare Barometer survey on the journey to diagnosis for people living with vascular diseases, with a special look on those affected by vascular anomalies. The analysis will come in 2024.
  • We are refreshing our introductory brochure that will be used to introduce ourselves to health care providers working (or related) in the field of vascular anomalies in Belgium.


We want to also acknowledge that all this work is only possible by the dedication of a team of volunteers that feel VASCAPA as a family and believe in our mission, and by our members' support: for your presence to our events, for your answers to our questions, for your contributions. We want to invite those that desire and can, to become volunteers and help us strengthen our impact.

Together, we look forward to 2024 for many more activities and actions together!!!