Translated Resources
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This section contains translated resources created or endorsed by our experts across Europe. These resources are designed to help both patients and healthcare professionals better understand rare multisystemic vascular diseases and their management.
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If you’re unsure which category to select, here is a short explanation of each.
Category descriptions
Clinical outcome measures: Tools designed to measure how effective a treatment or care plan is for a patient over time.
Clinical practice guidelines: Comprehensive recommendations for healthcare professionals on how to diagnose and treat specific conditions.
Consensus statements: Agreed recommendations developed by expert groups across Europe to guide clinical practice.
Do’s and Don’ts: Practical recommendations for patients and healthcare professionals, outlining actions to take or avoid in the daily management of a condition.
Patient Pathways: Visual pathways that explain the typical process for diagnosing and managing a specific rare disease.
Clinical Trials and Research: Information about research studies or clinical trials involving rare multisystemic vascular diseases.
Research Publications: Scientific articles and peer-reviewed publications from VASCERN experts and partners.
eLearning Modules: Structured online learning tools that provide in-depth education on rare disease topics.
Pills of Knowledge: Short videos that explain complex topics in a simplified and accessible way.
Webinars: Recorded online sessions where experts discuss important topics related to rare vascular diseases.
ERN Communication Materials: Awareness and educational materials developed by the European Commission as part of the communication efforts to promote the European Reference Network’s.
El Libro para colorear sobre el linfedema es una herramienta educativa y divertida para niños que viven con linfedema. Desarrollado por el Grupo de Trabajo de Linfedema Pediátrico y Primario (PPL-WG) de VASCERN, este recurso ayuda a los más pequeños a comprender la importancia del cuidado diario de la piel, el uso de prendas de compresión y cómo prevenir infecciones. A través de ilustraciones atractivas y actividades sencillas, los niños aprenden a integrar el tratamiento en su rutina diaria de forma positiva. Además, el libro fomenta la autonomía y fortalece la colaboración entre los niños, sus cuidadores y profesionales de salud. Es una adaptación visual y accesible de las recomendaciones “Qué hacer y qué no hacer” para el cuidado del linfedema infantil.
This Common & Clinical Outcomes Dataset: Adults and Children provides a standardised approach to evaluating patients with paediatric and primary lymphoedema (PPL). Developed by the VASCERN Paediatric and Primary Lymphoedema Working Group (PPL-WG), it supports harmonised data collection across clinical centres and is aligned with the FAIR Registry. The dataset includes core clinical measures such as limb volume, infection history, treatment types, and validated quality of life assessments for both children and adults.
Het Lymfoedeem Kleurboek is een vrolijk en leerzaam kleurboek dat speciaal is ontwikkeld om kinderen te helpen bij het begrijpen en omgaan met lymfoedeem. Aan de hand van speelse illustraties en eenvoudige uitleg leren zij hoe belangrijk goede huidverzorging en het dragen van compressiemateriaal is om infecties te voorkomen en het oedeem onder controle te houden. Dit boekje is gemaakt door de VASCERN werkgroep Pediatrisch en Primair Lymfoedeem en biedt praktische tips voor een positieve dagelijkse routine. Ideaal voor jonge patiënten en hun verzorgers!
Das Lymphödem-Malbuch vermittelt Kindern auf spielerische Weise, wie sie mit ihrem Lymphödem umgehen können. Entwickelt von der VASCERN-Arbeitsgruppe für pädiatrisches und primäres Lymphödem, erklärt dieses kindgerechte Malbuch die Bedeutung von Hautpflege und Kompression zur Vorbeugung von Infektionen. Mit liebevollen Illustrationen und praktischen Tipps unterstützt es Familien dabei, Wissen aufzubauen und den Alltag mit Lymphödem positiv zu gestalten.
O Livro para Colorir sobre Linfedema oferece uma forma divertida e educativa de ajudar crianças a compreenderem a sua condição. Criado pelo Grupo de Trabalho sobre Linfedema Pediátrico e Primário da VASCERN, este recurso amigável ensina bons hábitos de cuidado da pele e uso de compressão para prevenir infeções e gerir o linfedema. Com ilustrações e atividades envolventes, apoia as famílias com informação clara e prática para um dia a dia mais saudável e confiante.
Malebog om lymfødem viser med enkle tegninger, hvordan daglig vask, grundig tørring, fugtpleje og korrekt kompression holder hævelsen nede. Hver side indeholder små opgaver, mens forældre får en kort »gør-ikke-dette«-liste, der hjælper med at forebygge infektioner og ekstra hævelse.
Книжка за оцветяване при лимфедем показва на децата с прости рисунки как редовното измиване, внимателното подсушаване, хидратирането на кожата и правилната компресия държат отока под контрол. Всяка страница съдържа малки задачи, а родителите разполагат с ясен списък „не прави това“, който помага да се избегнат инфекции и допълнителни отоци.
Pobarvanka o limfedemu s preprostimi risbami pokaže, kako redno umivanje, temeljito sušenje in vlaženje kože ter pravilna kompresija pomagajo zadržati oteklino pod nadzorom. Kratke naloge otroka spodbujajo k vadbi novih navad, starši pa v priročnem seznamu »ne delaj tega« najdejo jasne opomnike za preprečevanje okužb in dodatne otekline.
Le cahier de coloriage sur le lymphœdème est une ressource éducative et ludique. Il a été spécialement conçu pour aider les enfants à mieux comprendre et gérer cette maladie au quotidien. Ce cahier a pour objectif de sensibiliser les jeunes aux soins essentiels de la peau, à l’importance du port de vêtements de compression et aux précautions à prendre pour prévenir les complications. Il propose des activités interactives et des illustrations captivantes. Un outil précieux pour les familles qui souhaitent intégrer la gestion du lymphœdème de manière positive et amusante dans la vie quotidienne de leurs enfants !
This colouring book offers a fun and interactive way for children to learn about managing lymphoedema. The activities in the book are tailored to educate children on the importance of proper skin care to prevent infections and keep their skin healthy.
Devoogdt N, Thomis S, Belva F, Dickinson-Blok J, Fourgeaud C, Giacalone G, Karlsmark T, Kavola H, Keeley V, Marques ML, Mansour S, Nissen CV, Nørregaard S, Oberlin M, Ručigaj TP, Somalo-Barranco G, Suominen S, Van Duinen K, Vignes S, Damstra R. The VASCERN PPL working group patient pathway for primary and paediatric lymphoedema. Eur J Med Genet. 2024 Dec 23;67:104905. doi: 10.1016/j.ejmg.2023.104905. Epub ahead of print. PMID: 38143023.
This is version 4 of the General Patient Pathway for Pediatric and Primary Lymphoedema. It offers a detailed pathway that outlines the journey from diagnosis through treatment and management.
For more insights on the patient pathway for paediatric and primary lymphoedema, we invite you also to read the published paper.
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
Damstra RJ, Vignes S; European Phelan-McDermid syndrome consortium; Mansour S. Consensus recommendations on lymphedema in Phelan-McDermid syndrome. Eur J Med Genet. 2023 Jun;66(6):104767. doi: 10.1016/j.ejmg.2023.104767. Epub 2023 Apr 17. PMID: 37075886.
The Pediatric and Primary Lymphedema (PPL) Working Group endorses the COVID-19 statement by the Lymphoedema Support Network
Damstra RJ, Halk AB; Dutch Working Group on Lymphedema. The Dutch lymphedema guidelines based on the International Classification of Functioning, Disability, and Health and the chronic care model. J Vasc Surg Venous Lymphat Disord. 2017 Sep;5(5):756-765. doi: 10.1016/j.jvsv.2017.04.012. Epub 2017 Jun 30. PMID: 28818234.
German guidline “Diagnostis and therapy of lymphedema“: Jörg Wilting, Rolf Bartkowski, Rüdiger Baumeister, Etelka Földi, Susanna Stöhr, Gerson Strubel, Klaus Schrader, Jürg Traber, May 2017
Report of German Guidelines with all the collaborating members from Germany, Austria and Switzerland
German guideline “Diagnostics and therapy of lymphedema“: Jörg Wilting, Rolf Bartkowski, Rüdiger Baumeister, Etelka Földi, Susanna Stöhr, Gerson Strubel, Klaus Schrader, Jürg Traber, May 2017
German guideline “Diagnostics and therapy of lymphedema“: Jörg Wilting, Rolf Bartkowski, Rüdiger Baumeister, Etelka Földi, Susanna Stöhr, Gerson Strubel, Klaus Schrader, Jürg Traber, S2k Leitlinie – Diagnostik und Therapie der Lymphödeme AWMF Reg.-Nr. 058-001, May 2017
The German guidelines are published here (organised by by 32 different groups in Germany, Austria and Switzerland).
Damstra RJ, Halk A-B. The Dutch lymphedema guidelines based on the International Classification of Functioning, Disability, and Health and the chronic care model, Journal of Vascular Surgery, 5 (2017) 756-765. doi:10.1016/j.jvsv.2017.04.012 (contains condensed summary from Dutch 2015 Lymphedema Guidelines)
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).
This video is a question and answer session between Carina Mainka, ePAG patient advocate and mother of a child with primary lymphedema, and Prof. Sahar Mansour, Consultant in Clinical Genetics from St George’s University NHS Hospital on genetics in primary lymphedema.
Prof. Mansour explains how genetics can affect primary lymphedema and the importance of genetic testing for patients and families with questions from Carina.
Devoogdt N, Van Zanten M, Damstra R, Van Duinen K, Dickinson-Blok JL, Thomis S, Giacalone G, Belva F, Suominen S, Kavola H, Oberlin M, Rossler J, Rucigaj TP, Riches K, Mansour S, Gordon K, Vignes S, Keeley V. Paediatric lymphoedema: An audit of patients seen by the paediatric and primary lymphoedema group of vascular European Reference Network (VASCERN). Eur J Med Genet. 2022 Dec;65(12):104641. doi: 10.1016/j.ejmg.2022.104641. Epub 2022 Oct 13. PMID: 36243335.
Devoogdt N, Partsch H, Heroes AK, De Vrieze T, De Groef A, Geraerts I, Damstra RJ, Hafner J, Keeley V, Becker A, Mosti G, Brouwer E, Thomis S. The ICC Compression Questionnaire: A Comprehensive Tool to Evaluate Compression Materials or Devices Applied in Subjects with Lymphedema or Chronic Venous Disease. Lymphat Res Biol. 2022 Apr;20(2):191-202. doi: 10.1089/lrb.2020.0125. Epub 2021 Mar 30. PMID: 33781091; PMCID: PMC9081015.
Flödesschemat ger riktlinjer för hantering av rosfeber hos lymfödempatienter, med tecken, diagnos, behandling, förebyggande och egenvård för bättre resultat.
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.
Brouillard P, Witte MH, Erickson RP, Damstra RJ, Becker C, Quéré I, Vikkula M. Primary lymphoedema. Nat Rev Dis Primers. 2021 Oct 21;7(1):77. doi: 10.1038/s41572-021-00309-7. PMID: 34675250.
This webinar on “Infection and Lymphedema” includes an informative presentation followed by a Q&A session, featuring questions collected from the Pediatric and Primary Lymphedema (PPL) patient community.
Featuring PPL Working Group members: Dr. Kirsten van Duinen, Dr. Tanja Planinšek Ručigaj, Manuela Lourenço Marques (ePAG Deputy Co-Chair for PPL) and Pernille Henriksen (ePAG Co-Chair for PPL).
Please also refer to the accompanying document: Cellulitis Flowchart for Patients with Lymphedema
Gordon K, Varney R, Keeley V, Riches K, Jeffery S, Van Zanten M, Mortimer P, Ostergaard P, Mansour S. Update and audit of the St George’s classification algorithm of primary lymphatic anomalies: a clinical and molecular approach to diagnosis. J Med Genet. 2020 Oct;57(10):653-659. doi: 10.1136/jmedgenet-2019-106084. Epub 2020 May 14. PMID: 32409509; PMCID: PMC7525776.
The Paediatric and Primary Lymphoedema (PPL) Working Group endorses the COVID-19 statement by the Lymphoedema Support Network. These suggestions have been produced using the most up to date advice available to the Lymphoedema Support Network and are not intended to replace or supersede advice you may have been given from your health care advisor.
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).
All Pediatric and Primary Lymphedema (PPL) Factsheets in one document
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).
This Charter has been developed by the Children’s Lymphoedema Special Interest Group (CLSIG), a group comprised of health care professionals directly involved in the provision of care for children with lymphoedema and their families. The Charter represents the minimum requirements that a child or young person with lymphoedema should have access to. The aim is to inform clinicians, commissioners and lymphoedema services of what a child, young person and their family should expect when lymphoedema is suspected or diagnosed. It offers direction to the coordination of care and support with the school and community services. Supporting documents and clinic information are available here.
Fotiou E, Martin-Almedina S, Simpson MA, Lin S, Gordon K, Brice G, Atton G, Jeffery I, Rees DC, Mignot C, Vogt J, Homfray T, Snyder MP, Rockson SG, Jeffery S, Mortimer PS, Mansour S, Ostergaard P. Novel mutations in PIEZO1 cause an autosomal recessive generalized lymphatic dysplasia with non-immune hydrops fetalis. Nat Commun. 2015 Sep 3;6:8085. doi: 10.1038/ncomms9085. Erratum in: Nat Commun. 2019 Apr 26;10(1):1951. PMID: 26333996; PMCID: PMC4568316.