Update from the ePAG-HTAD-WG at VASCERN
Text by Lise Murphy
How can VASCERN help you?
Video about the different groups in VASCERN and how it is becoming more robust as an organization. This is the video that will be showing in all information meetings about VASCERN, for example in Madrid on the 30th January at the 1st Workshop for Spanish speaking ePAG Advocates. Elena de Moya from HTAD and Luisa Botella from HHT will be there as well as Inez Hernando from EURORDIS. We are looking forward to seeing more involvement from Spain in 2019!
Time to move – 3 a week
Look out for 3 a week coming soon – join the community of Marfan people joining forces to stay as healthy as we possibly can by doing sports in a sensible way! Many Marfan organisations have already made plans to join this movement. We will have videos and lots of encouragement during 2019. Coming up shortly in the next newsletter. #3aweek #VASCERN #HTAD
Plans for 2019
Continue with the meetings of the clinicians, once a month virtually and then in person on the 14th May for one day and on the 7th and 8th November for a two-day conference, VASCERN Days. Hoping for more clinicians and patient organisations to join from countries not yet represented. More videos to come about training of clinicians and what we can learn from each other as patients. Patient advocates will look at how to have a more holistic approach in order to contribute to the development of the multidisciplinary clinics.
Want to be more active?
If you would like to be more involved in our robust little active patient advocates group (ePAG HTAD-WG), you just need to send me a mail. And if your organisation wants to join the network (passive) and receive more information, you can join here. We particularly welcome Loeys Dietz Syndrome (LDS) organisations.
If you want to see what we have reached so far, please go to our website, where you can find the Do’s and Don’ts for Marfan, or watch some of our Pills of Knowledge at our YouTube Channel. (Just click on the icon at the top left of the website)
Lise Murphy, Co-chair on behalf of the patients´ group at Heritable Thoracic Aorta Diseases, HTAD at VASCERN
About the ePAG HTAD-Working Group at VASCERN
As you probably know, HTAD means Heritable Thoracic Aortic Diseases.
The ePAG HTAD is a network of patient organisations related to HTAD, working hand in hand with the doctors in the European Reference Networks for Vascular Diseases. For more info HTAD/VASCERN.