Do’s and Don’ts Factsheets for HTAD, MSA and HHT now available!
In case you missed it in yesterday's newsletter: VASCERN has just published the Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations. These factsheets outline the special care/precautions that need to be taken with vascular rare disease patients in situations that can be encountered by everyone (e.g. exercise, anesthesia, pregnancy, stroke etc). So far we have factsheets for Marfan syndrome and Related Disorders (by the HTAD-WG, #Marfan), Vascular Ehlers Danlos Syndrome (by the MSA-WG, #vEDS) and Hereditary Haemorrhagic Telangiectasia (by the HHT-WG, #HHT). These factsheets are useful documents that should be shared with all healthcare professionals who are not familiar with these rare diseases. More factsheets are on the way and the PPL and VASCA-WGs are currently working on their own sets (coming soon)!?✍
Links to all the factsheets here: https://vascern.eu/dos-and-donts-factsheets-for-htad-msa-and-hht-now-available/ Marfan Europe Network The Marfan Foundation AssoMarfans HHT Onlus HHT Ireland Cure HHT HHT España Deutsche Ehlers-Danlos Initiative e. V. The Ehlers-Danlos Society Filière de santé Maladies Rares FAVA-Multi ... See more
