Summary of the Hereditary Haemorrhagic Telangiectasia Working Group’s Online Meeting!

The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) held a virtual meeting on the morning of June 12th, 2020. Originally scheduled as a face to face meeting in Lyon, France, the group had to change their plans, due to COVID-19, and held the meeting online.

Chaired by Dr. Sophie Dupuis-Girod (HHT WG Co-Chair). the meeting was attended by 13 healthcare professionals from 6 EU countries (France, Denmark, Germany, Italy, the Netherlands, and UK), including HHT Chair, Professor Claire Shovlin and Deputy Co-Chair, Professor Elisabetta Buscarini. The patients were equally represented by European Patient Advocacy Group (ePAG) Co-Chair and Deputy Co-Chair for HHT, Claudia Crocione and Christina Grabowski.

The group started with a discussion on how COVID-19 had affected the services for HHT patients (and the current situation today) in each country and the patient advocates also gave their feedback from HHT patients that had reported being infected with SARS-CoV-2 and its impact. The group will consider the potential of a COVID-19 questionnaire dedicated to HHT (with help from HHT ePAG) as well as possible updates to their VASCERN HHT Statement on COVID-19, as new information becomes available.

Next, a presentation on the early results from a French multicentre review of pulmonary arteriovenous malformation (PAVM) embolisation outcomes in children was given by special guest Dr. Salim Si-Mohamed as well as Dr. Sophie Dupuis-Girod. The presentation was well appreciated by the group and there was great interest in examining their findings further.

The HHT WG was then joined by VASCERN coordinator Professor Guillaume Jondeau and Pim Kamerling (VASCERN Data Steward) in order to discuss the HHT Registry and give updates on the project. An update on the VASCERN app was also given by VASCERN project manager Marine Hurard.

The HHT WG equally discussed the topics for future position statements/articles and ended the meeting with a case discussion, using the Clinical Patient Management System (CPMS), involving a Danish patient.

We congratulate the HHT WG on a very interesting and fruitful online meeting and look forward to their future outputs!

To learn more about the HHT WG, visit their page here

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