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).
All Pills of Knowledge by the Pediatric and Primary Lymphedema Working Group (PPL-WG) can be found in the PPL-WG Playlist here
Dette er en omfattende videoserie i tre dele med Dr. Michael Oberlin, en erfaren specialist i lymfologi, og Elena Matta, en engageret fortaler for patienter med pædiatrisk og primær lymfødem. Denne informative serie er omhyggeligt udformet i et spørgsmål-og-svar-format, som adresserer vigtige spørgsmål vedrørende familieplanlægning, graviditet og fødsel/pleje efter fødslen for patienter med primær lymfødem. Skabt specielt til personer med primær lymfødem og deres partnere.
- Første del: Familieplanlægning ved primær lymfødem
- Anden del: Graviditet ved primær lymfødem
- Tredje del: Fødsel/pleje efter fødslen ved primær lymfødem
Denne video er på tysk med undertekster, der i øjeblikket kun er tilgængelige på engelsk.
For at få adgang til de fulde spørgsmål og svar, klik venligst på linkene nedenfor: Dansk
Dieses Video ist Teil einer umfassenden dreiteiligen Videoreihe mit Dr. Michael Oberlin, einem erfahrenen Spezialisten für Lymphologie, und Elena Matta, einer leidenschaftlichen Verfechterin von pädiatrischen und primären Lymphödempatienten. Diese informative Reihe wurde sorgfältig in einem Frage- und Antwortformat zusammengestellt und behandelt dringende Fragen rund um Familienplanung, Schwangerschaft und Entbindung/Postpartale Versorgung für Patienten mit primärem Lymphödem. Sie wurde speziell für Menschen mit primärem Lymphödem und ihre Partner erstellt.
Dieses Video ist in deutscher Sprache mit Untertiteln, die derzeit nur in Englisch verfügbar sind.
Um zu den vollständigen Fragen und Antworten zu gelangen, klicken Sie bitte auf die nachstehenden Link:
Dieses Video ist Teil einer umfassenden dreiteiligen Videoreihe mit Dr. Michael Oberlin, einem erfahrenen Spezialisten für Lymphologie, und Elena Matta, einer leidenschaftlichen Verfechterin von pädiatrischen und primären Lymphödempatienten. Diese informative Reihe wurde sorgfältig in einem Frage- und Antwortformat zusammengestellt und behandelt dringende Fragen rund um Familienplanung, Schwangerschaft und Entbindung/Postpartale Versorgung für Patienten mit primärem Lymphödem. Sie wurde speziell für Menschen mit primärem Lymphödem und ihre Partner erstellt.
Dieses Video ist in deutscher Sprache mit Untertiteln, die derzeit nur in Englisch verfügbar sind.
Um zu den vollständigen Fragen und Antworten zu gelangen, klicken Sie bitte auf die nachstehenden Link:
Dieses Video ist Teil einer umfassenden dreiteiligen Videoreihe mit Dr. Michael Oberlin, einem erfahrenen Spezialisten für Lymphologie, und Elena Matta, einer leidenschaftlichen Verfechterin von pädiatrischen und primären Lymphödempatienten. Diese informative Reihe wurde sorgfältig in einem Frage- und Antwortformat zusammengestellt und behandelt dringende Fragen rund um Familienplanung, Schwangerschaft und Entbindung/Postpartale Versorgung für Patienten mit primärem Lymphödem. Sie wurde speziell für Menschen mit primärem Lymphödem und ihre Partner erstellt.
Dieses Video ist in deutscher Sprache mit Untertiteln, die derzeit nur in Englisch verfügbar sind.
Um zu den vollständigen Fragen und Antworten zu gelangen, klicken Sie bitte auf die nachstehenden Links:
This is a comprehensive 3-part video series featuring Dr. Michael Oberlin, an experienced Lymphology specialist, and Elena Matta, a passionate pediatric and primary lymphedema patient advocate. This informative series has been thoughtfully crafted in a question and answer format, addressing pressing questions surrounding family planning, pregnancy, and delivery/postpartum care for primary lymphedema patients. Created specifically for individuals with primary lymphedema and their partners.
- First part: Family Planning in Primary Lymphedema
- Second part: Pregnancy in Primary Lymphedema
- Third part: Delivery/Postpartum Care in Primary Lymphedema
This video is in German with subtitles currently available only in English.
To access the full questions and answers, please click on the links below:
Bulgarian Danish Dutch English French German Italian Norwegian Portuguese Spanish Swedish
Това е всеобхватна видео поредица в три части с участието на д-р Майкъл Оберлин, опитен специалист по лимфология, и Елена Мата, страстен застъпник за пациенти с детски и първичен лимфедем. Тази информативна поредица е внимателно създадена в формат въпроси и отговори, като се разглеждат належащи въпроси, свързани с планиране на семейство, бременност и грижи по време на раждане и следродилния период за пациенти с първичен лимфедем. Създадена е специално за хора с първичен лимфедем и техните партньори.
- Първа част: Планиране на семейство при първичен лимфедем
- Втора част: Бременност при първичен лимфедем
- Трета част: Раждане/грижи след раждането при първичен лимфедем
Това видео е на немски език, със субтитри, които в момента са налични само на английски.
За достъп до пълните въпроси и отговори, моля, кликнете на връзките по-долу: Български
This video is validated by members of the Pediatric and Primary Lymphedema Working Group (PPL WG).
In this Pill of Knowledge (PoK), two teenagers, Laura and Sven, ask each other basic questions about living with lymphedema.
Video in Italian. Subtitles available in English, Danish, Dutch, Finnish, French, German, Italian, Norwegian, Portuguese, Spanish and Swedish.
Created by andLINFA (The National Association of Sufferers of Lymphatic Disorders – Portugal) and validated by members of the Pediatric and Primary Lymphedema Working Group (PPL WG).
In this Pill of Knowledge (PoK), Leonor, a Portuguese girl with lymphedema gives her testimonial of what it is like to live with this rare disease. It is suitable for both children and adults and a great resource for raising awareness of PPL.
Video is in Portuguese but subtitles are available in 9 European languages (Portuguese, English, Danish, Swedish, Dutch, Italian, Spanish, German and French).
Created by Carina Mainka (ePAG patient advocate for the PPL WG and representative of KIF11 Kids e.V.) and validated by members of the Pediatric and Primary Lymphedema Working Group (PPL WG).
Carina presents the importance of genetic testing and receiving proper genetic counselling when primary lymphedema is diagnosed in a family and how reaching out to a patient association can be of great support.
Video in German. Subtitles available in German, English, French, Portuguese, Swedish, Norwegian, Finnish, Italian, Slovenian, Spanish, Dutch and Danish.
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. Subtitles available in 4 European languages (English, French, Dutch and German).
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. Subtitles available in 4 European languages (Dutch, English, French and German).
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.
Video in English. Subtitles available in 5 European languages (English, French, Dutch, German and Finnish).