Pills of Knowledge (PoK)
Pills of Knowledge (PoK) are 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).
Link to the playlist for the VASCA-WG on our YouTube Channel is here
Guide for primary school teachers with pupils with bloodvessel (vascular) malformations. This guide has been produced by CMTC-OVM and has been reviewed and validated by the VASCERN Vascular Anomalies (VASCA) Working Group.
Guide for secondary school teachers with students with bloodvessel (vascular) malformations. This guide has been produced by CMTC-OVM and has been reviewed and validated by the VASCERN Vascular Anomalies (VASCA) Working Group.
The psychological aspects of living with a rare disease.
Parent support guide for the care of a child with a rare condition for 12-17 years of age. This guide has been produced by CMTC-OVM and has been reviewed and validated by the VASCERN Vascular Anomalies (VASCA) Working Group.
Parent support guide for the care of a child with a rare condition for 5-11 years of age. This guide has been produced by CMTC-OVM and has been reviewed and validated by the VASCERN Vascular Anomalies (VASCA) Working Group.
Parent support guide for the care of a child with a rare condition from 0 – 4 years of age. This guide has been produced by CMTC-OVM and has been reviewed and validated by the VASCERN Vascular Anomalies (VASCA) Working Group.
Parent support guide for the care of a child with a rare condition under 0 years of age. This guide has been produced by CMTC-OVM and has been reviewed and validated by the VASCERN Vascular Anomalies (VASCA) Working Group.
This PoK video (produced by the patient organisation HEVAS and revised and validated by the VASCA-WG) presents the various treatment options for lymphatic malformations. It is intended for patients and the general public and uses simple language to explain the various medical terms and procedures discussed.
Video in English. Subtitles are currently available in 7 European languages (English, Dutch, French, German, Italian, Spanish and Swedish).
This PoK video, produced by the patient organisation HEVAS and validated by the VASCA-WG, gives an introduction to Klippel-Trenaunay syndrome (KTS), a congenital vascular bone syndrome. It is intended for patients and the general public and uses simple language to explain the clinical characteristics of this rare disease.
Video in English. Subtitles are currently available in 7 European languages (English, Dutch, French, German, Italian, Spanish and Swedish).
This short PoK video explains how an error in the PIK3CA gene can be the cause of congenital vascular malformations, such as lymphatic and venous malformations, which can be isolated or occur in overgrowth syndromes. Diagnosis and treatment are also briefly covered.
It is intended for patients and the general public and uses simple language to introduce PIK3CA related vascular abnormalities, which includes the complex group of disorders known as PROS (PIK3CA-Related Overgrowth Spectrum).
Created by the patient organisation HEVAS (the Dutch Patient organisation for hemangioma and vascular malformations), this PoK was then revised and validated by VASCERN’s Vascular Anomalies Working Group (VASCA-WG).
Video in English with subtitles in English.
This PoK video (produced by the patient organisation HEVAS and revised and validated by the VASCA-WG) gives an introduction on the lymphatic system and lymphatic malformations. It is intended for patients and the general public and uses simple language to explain the various medical terms discussed.
Video in English. Subtitles are currently available in 7 European languages (English, Dutch, French, German, Italian, Spanish and Swedish).
Created by Dr. Kristiina Kyrklund (Pediatric Surgeon, Helsinki University Hospital, Helsinki, Finland)
In this Pill of Knowledge (PoK) Dr. Kristiina Kyrklund gives an introduction on the individualized management of vascular anomalies and how the chosen treatment is based on the characteristic symptoms and location of the anomaly. Suitable for both healthcare professsionals and patients.
Video in English. Subtitles available in 8 European languages (English, Dutch, Finnish, French, German, Italian, Spanish and Swedish).
Created by Prof. Leo Schultze Kool (Interventional Radiologist, Radboud University Medical Center, Nijmegen, Netherlands).
This Pill of knowledge (PoK) gives a brief summary of why multi-disciplinary expert teams are so necessary for the management and treatment of vascular anomalies. It is intended for the general public.
Video in English. Subtitles available in 8 European languages (English, Dutch, Finnish, French, German, Italian, Spanish and Swedish)
Created by Dr. Friedrich Kapp (Physician Scientist, University Medical Center, Freiburg, Germany).
This Pill of Knowledge (PoK) talks about the diagnostic approaches for vascular anomalies. The various types of examination and tests involved in reaching an appropriate diagnosis are described. This PoK is a valuable tool for healthcare professionals and patients wanting to learn more about how vascular anomalies are diagnosed.
Video in English. Subtitles available in 8 European languages (English, Dutch, Finnish, French, German, Italian, Spanish and Swedish).
Created by Prof. Laurence Boon (Plastic Surgeon, Coordinator of the Center for Vascular Anomalies, Cliniques Universitaires St Luc, Brussels, Belgium).
This Pill of Knowledge (PoK) gives a brief overview of the classification of vascular anomalies. It is intended for the medical community who is not familiar with these anomalies as it introduces the main types of vascular anomalies and their characteristics.
Video in English. Subtitles available in 8 European languages (English, Dutch, Finnish, French, German, Italian, Spanish and Swedish).