Hereditary Haemorrhagic Telangiectasia from VASCERN HHT

An Introduction to Hereditary Haemorrhagic Telangiectasia (HHT) by the VASCERN HHT-WG is a video that introduces the HHT-WG and their expertise in this rare vascular disease. Common problems of HHT are equally presented and several experts talk about their recent research that indicates that life expectancy in patients with HHT is good, provided that they are properly screened and receive the benefits of modern medicine. This video is mainly directed at HHT patients but is also of interest to the medical community and the general public wishing to learn more about HHT and the HHT-WG in VASCERN.
Video in English.
PoKs are the deliverable for VASCERN Work Package 4 on Pills of Knowledge, defined as short single video lessons (of approximately 3-5 minutes long) in which an expert talks about a specific topic that has been selected and validated by the Rare Disease Working Groups (RDWGs).
To learn more about the HHT-WG: vascern.eu/exp...
To learn more about VASCERN, please visit our website: www.vascern.eu

[@susangirling5322]

Great VIdeo, but we do not have the Luxury of that kind of Health Support in New Zealand.
Would be great if VASCERN ERN, could connect with Health professionals here, then maybe more lives will be saved instead of Lost. My Brother died at 47 and My Mum, due to lack of screening and understanding of the care required for this condition. My eldest Daughter too almost passed, from blood loss, due to lack of knowledge from the Medical Profession. It is not easy for Us here, with HHT to be taken seriously. New Zealand really does need outside support in this area. Our Lives literally depend on the proper screening and care, and it is just not avaliable.

[@hhtsverige]

Svenska undertexter finns. i) Välj ikonen "undertexter", ii) välj "inställningar" iii) aktivera autogenerad textning och välj svenska.

[@VASCERNERNRareVascularDiseases]

Thanks a lot for your comment. We have all the subtitles available,
as indicated on the EU languages ​​page of our website : vascern.eu/eu-languages/