VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
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We are delighted to release the 13 new Pills of Knowledge (PoK) videos (12 in English and 1 in French) that were filmed during our 2-day annual seminar (VASCERN Days 2018) using the EU co-funding of the 3rd Health Programme.
Pills of Knowledge Video (PoK) are short (2 to 5 minutes maximum long) single videos where an expert (healthcare professional or patient advocate) talks about a specific topic that has been selected and validated by the Rare Disease Working Groups (RDWGs). VASCERN’s PoKs are educative eLearning tools and target a wide variety of viewers ranging from healthcare professionals and patients, to the general public.
Each Rare Disease Working Group (RDWG) was involved in this project and has made 1-3 PoK on a specific topic. Subtitles are currently available in English and subtitles in all of the EU languages represented in the corresponding RDWGs are being added.
Here are the list of the new PoK videos now available for you to share in order to raise awareness, educate or inform about the rare diseases covered by our network:
Created by Prof. Guillaume Jondeau (Cardiologist, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat-Claude Bernard, Paris, France) and Lise Murphy (European Patient Advocacy Group (ePAG) Patient Advocate Co-Chair for HTAD, Svenska Marfanföreningen, Sweden).
This Pill of Knowledge (PoK) features a conversation between a patient and doctor about the importance of physical activity and what exercise is suitable for patients with Marfan syndrome. It aims to encourage Marfan syndrome patients to participate in a suitable form of exercise 3 times a week. This message will be further shared via the 3 a week campaign (more information to come). Video in English.
Also available in the Heritable Thoracic Aortic Diseases Working Group (HTADWG) Playlist here
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.
Also available in the Vascular Anomalies Working Group (VASCA-WG) Playlist here
Created by Dr. Kirsten F. van Duinen (Dermatologist, Nij Smellinghe Hospital Drachten, Netherlands)
This Pill of Knowledge (PoK) introduces the therapeutic process involved in the treatment of Pediatric and Primary Lymphedema (PPL) and how compression therapy is the cornerstone of management and treatment in PPL. It is intended for healthcare professionals and patients who would like to know more about the different types of compression therapy used to manage PPL. Video in English
Also available in the Pediatric and Primary Lymphedema Working Group (PPL-WG) Playlist here
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
Also available in the Vascular Anomalies Working Group (VASCA-WG) Playlist here
Created by Prof. Guillaume Jondeau (Cardiologue, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat-Claude Bernard, Paris, France).
This Pill of knowledge talks about how physical activity is beneficial for Marfan syndrome patients and the types of sports that are adapted for these patients and which to avoid. It is meant for patients and gives clear and simple explanations for why certain sports are well tolerated in Marfan patients and others are not. Video in French. Subtitles available in English and French.
Also available in the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) Playlist here
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.
Also available in the Vascular Anomalies Working Group (VASCA-WG) Playlist here
Created by Dr. Salma Adham (Vascular Physician, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen Georges Pompidou (HEGP), Paris, France).
This Pill of knowledge (PoK) gives a thorough overview of the gastrointestinal complications associated with vascular Ehlers-Danlos Syndrome (vEDS). It details the first digestive complications most frequently encountered in vEDS patients and is directed towards healthcare professionals and the scientific community. Scientific data on this subject is equally presented. Video in English.
Also available in the Medium-Sized Arteries Working Group (MSA-WG) Playlist here
Created by Prof. Julie De Backer (Cardiologist, Ghent University Hospital, Ghent, Belgium).
This Pill of knowledge (PoK) talks about the group of vascular diseases known as Heritable Thoracic Aortic Diseases. Both syndromic and non-syndromic forms are described and the genetics of HTAD are also explored. It is suitable for healthcare professionals and anyone wishing to learn more about HTAD. Video in English.
Also available in the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) Playlist here
Created by Juergen Grunert (President Deutsche Ehlers-Danlos Initiative e.V., ePAG co-chair for the Medium Sized Arteries Working Group (MSA-WG)) and Charissa Frank (President bindweefsel.be, ePAG deputy co-chair for the Medium Sized Arteries Working Group (MSA-WG)).
In this Pill of Knowledge (PoK), our ePAG Co-Chair and Deputy Co-Chair for the Medium-Sized working group (MSA-WG) talk about vascular Ehlers-Danlos syndrome (vEDS) from a patient’s perspective. Their conversation covers both the unmet needs of vEDS patients and how the VASCERN MSA-WG is working to fulfill these needs (e.g. via educational materials, patient pathways and Do’s and Don’ts factsheets). It is directed towards patients, healthcare professionals and the general public in order to raise awareness for this rare vascular disease. Video in English.
Also available in the Medium-Sized Arteries Working Group (MSA-WG) Playlist here
Created by Dr. Michael Frank (Cardiologist, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen – Georges Pompidou (HEGP), Paris, France).
In this Pill of knowledge (PoK), Dr. Michael Frank gives a complete overview of the arterial complications associated with Vascular Ehlers-Danlos Syndrome (vEDS) and the most common treatment for each type of complication. This PoK is meant educate healthcare professionals who are not yet familiar with vEDS in order for them to be aware of the complications that occur in these patients. Video in English.
Also available in the Medium-Sized Arteries Working Group (MSA-WG) Playlist here
Created by Dr. Vaughan Keeley (Lymphedema Consultant, Derby Teaching Hospitals NHSF Trust, Derby, UK)
In this Pill of Knowledge (PoK), Dr. Vaughan Keeley gives an overview of cellulitis/erysipelas, which is a bacterial infection and a common complication in patients with Pediatric and Primary Lymphedema (PPL). He reviews the clinical presentation, diagnosis and treatment for cellulitis. This PoK is suitable for both patients and healthcare professionals. Video in English.
Also available in the Pediatric and Primary Lymphedema Working Group (PPL-WG) Playlist here
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.
Will soon be available in the Vascular Anomalies Working Group (VASCA-WG) Playlist here
An Introduction to Hereditary Haemorrhagic Telangiectasia (HHT) by the VASCERN HHT-WG is a video that introduces the HHT-WG and their expertise in this rare vascular disease. Common problems of HHT are equally presented and several experts talk about their recent research that indicates that life expectancy in patients with HHT is good, provided that they are properly screened and receive the benefits of modern medicine. This video is mainly directed at HHT patients but is also of interest to the medical community and the general public wishing to learn more about HHT and the HHT-WG in VASCERN.
Also available in the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) Playlist here
Don’t forget to visit and subscribe to the VASCERN Youtube channel so that you never miss the publication of a new video!
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