Pills of knowledge Videos

 

Pills of Knowledge (PoK) videos 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

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.

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.

HTAD-WG Pills of Knowledge videos playlist

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.

PPL-WG Pills of Knowledge videos playlist

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

VASCA-WG Pills of Knowledge videos playlist

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

The lymphatic system & lymphatic malformations (Lymfestelsel en lymfatische malformaties) – video in Dutch

This video, produced by the patient organisation HEVAS and validated by the VASCA-WG, talks about the lymphatic system and lymphatic malformations. This video has been made for patients and introduces the patient organisation HEVAS and their work.

View this video here

This video is currently being revised by the VASCA-WG so that an updated English version can be created. Stay tuned for its publication.

Treatments for lymphatic malformations (Behandelingen voor lymfatische malformaties) – video in Dutch

This video, produced by the patient organisation HEVAS and validated by the VASCA-WG, describes the treatments currently available for lymphatic malformations in a clear and understandable manner suited for patients.

View this video here

This video is currently being revised by the VASCA-WG so that an updated English version can be created. Stay tuned for its publication.

Link to the playlist for General Videos on VASCERN and the European Reference Networks for Rare Diseases on our YouTube Channel is here

 

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