Pills of knowledge

 

Pills of Knowledge (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).

We currently have 6 PoK available and should have another 13 (from all of the RDWGs) completed by the end of 2018.

You can select a PoK by RDWG by clicking on the headings below. All VASCERN PoK can equally be found on our YouTube channel.

HHT-WG Pills of Knowledge videos playlist here

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

Link to the playlist for the HTAD-WG on our YouTube Channel is here

The first Pill of Knowledge (PoK) by the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG) is now available on our YouTube Channel!

This PoK is on the topic of Marfan Syndrome and is produced by HTAD-WG Chair Prof Julie De Backer.

This PoK gives an overview of the diagnosis of Marfan syndrome with its main clinical manifestations and diagnostic criteria described. The genetics of this rare disease are also briefly outlined in a clear and comprehensible manner. This video is a great introduction to Marfan syndrome that is suitable for both the general public and the medical community.

Subtitles for this PoK are also available in 7 European languages.

See the video here

The MSA-WG is currently working on their first PoK that should be available soon.

An Overview of Pediatric and Primary Lymphedema

The video introduces the lymphatic system and gives a brief summary on what exactly is lymphedema. Diagnosis, treatment, and complications are all explained in a clear and understandeable manner, making this video accessible to patients and the general public.

View this video here

The VASCA-WG is currently working on their first PoK that should be available soon.

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