We are very pleased to announce that the first two Pills of Knowledge (PoK) produced by VASCERN are now available on our YouTube channel! These first two PoK have been created by the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG).
The first video entitled, “An Overview of Hereditary Haemorrhagic Telangiectasia” features an informative presentation by Prof Claire Shovlin (Chair of the HHT WG from Hammersmith Hospital – Imperial College Healthcare NHS Trust, UK). This PoK is accessible to everyone and gives viewers an introduction to HHT by explaining its main clinical features (and their frequency) in addition to the genetics and aetiology of this rare disease.
View this video here
The second video, “Hereditary Haemorrhagic Telangiectasia (HHT) is more than a bleeding Nose. What an ENT doctor needs to know about HHT and why”, is made by Prof Anette Kjeldsen (HHT-WG Member, from theHHT Centre at Odense University Hospital, Denmark) and is intended for Ear, Nose & Throat (ENT) Doctors in order to help them properly recognize the signs and symptoms of HHT. As ENT doctors are often the first healthcare professionals that HHT patients consult, it is essential for them to be able to identify a potential HHT patient and refer these patients to an HHT expert Centre for screening and treatment in order to decrease patient morbidity.
View this video here
PoK 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). The VASCERN eHealth-WG, chaired by Prof Alessandro Pini, holds virtual monthly meetings to define the strategy and follow-up of this WP4, which is then implemented by our 5 RDWGs.
These videos will be made available on our YouTube Channel and will equally be shared on our social media channels. The PoK can be made in English or the expert’s native language and can be targeted towards either patients, the general public or healthcare professionals. We will also soon have the links to these PoK videos, along with links to other educational documents, on the VASCERN website under the heading “Educational Material” (currently under construction). Here, users will be able to select a language and find links to all educational material in the 10 language (ex: these first two PoK in English will appear here). These VASCERN PoK will provide valuable information on the many rare diseases that are covered by our European Reference Network.
Stay tuned to discover more PoK from our RDWGs in the coming months!