Recap of the Medium-Sized Arteries Working Group online meeting!
Like all of our Rare Disease Working Groups, the Medium-Sized Arteries Working Group (MSA WG) had to hold their spring face-to-face meeting online. Hosted by MSA WG Chair, Dr. Leema Robert, it took place on the afternoon of Thursday June 25th, 2020 and was attended by 7 healthcare professionals from 5 countries (France, Belgium, The Netherlands, the U.K. and Cyprus) as well as two patient advocates (European Patient Advocacy Group (ePAG) Co-Chair and Deputy Co-Chair for MSA: Juergen Grunert and Charissa Frank).
Next, Marine Hurard (VASCERN Project Manager) gave an update on the second version of the VASCERN app and the group talked about the current situation of national networks of expert centers for vEDS (i.e. if they exist or not) for each country.
They then had several interesting discussions on future projects underway including a consensus statement on the monitoring of vEDS patients (i.e. follow-up investigations that are recommended, at what frequency, etc.) and a survey to start collecting cases of vEDS patients that have undergone In vitro fertilisation (IVF) or preimplantation genetic diagnosis (PGD). Outcome measures were also briefly discussed.
The topic of the ultra rare forms of Ehlers-Danlos syndrome (EDS), that may have vascular complications, was also brought up and this will be discussed with members of ERN ReCONNET to ensure that these very rare forms of EDS are covered by the ERNs so that all EDS patients’ interests are being taken care of.
We congratulate the MSA WG for a very productive meeting and look forward to their future outputs. While they may be a smaller group in terms of numbers of members, they are full of big ideas and lots of enthusiasm when it comes to improving the lives of vEDS patients!