MORE INFORMATION ON LYMPHATIC MALFORMATIONS
VIDEOS:
This video is an excellent introduction to the differences in Complex Lymphatic Anomalies. It is recommended you begin here before diving into the literature:
Complex Lymphatic Anomalies 101: An Overview for the Layperson
The following 2 videos are wonderful explanations of the lymphatic system for children (and adults):
What is the lymphatic system? Pt. 1 (anatomy and physiology) https://www.youtube.com/watch?v=MfALHzheD-g&t=4s
What is the lymphatic system Pt. 2 (lymphatic malformations) https://www.youtube.com/watch?v=QU6XMOo5UOE
FREQUENTLY ASKED QUESTIONS:
This Lymphatic Malformation booklet is an excellent resource published by the Vascular Birthmarks Foundation. It answers many frequently asked questions surrounding Lymphatic Malformations.
https://birthmark.org/wp-content/uploads/2023/01/LM_FAQ_Final-1.pdf
DATABASE OF ARTICLES:
The Cloves Syndrome Community has developed a database which "will serve as a reference list and educational resource for our existing community as well as young researchers and clinicians as we develop our International PIK3CA Conditions Collaborative Research Network" (Cloves Syndrome Community Website, 2025). The database can be found here:
CLOVES_PROS_PAPERS_2020_111620 - Google Sheets
DEFINITIONS:
Note: when searching for these diseases on Canadian databases they do not exist. Highlighting the need for awareness as well as research to be strengthened in Canada. All of the sites listed below are International.
Complex Lymphatic Anomalies:
https://www.texaschildrens.org/health/complex-lymphatic-anomalies
Lymphatic Malformations:
https://rarediseases.org/rare-diseases/lymphatic-malformations/
Generalized Lymphatic Anomaly:
Kaposiform Lymphangiomatosis (KLA):
https://rarediseases.org/gard-rare-disease/kaposiform-lymphangiomatosis/
Gorham Stout Disease (GSD):
https://rarediseases.org/rare-diseases/gorham-stout-disease/
Kaposiform Hemangioendothelioma (KHE):
https://www.childrenshospital.org/conditions/kaposiform-hemangioendothelioma
Diffuse Pulmonary Lymphangiomatosis:
https://rarediseases.org/rare-diseases/diffuse-pulmonary-lymphangiomatosis/
ORGANIZATIONS:
The American Society of Pediatric Hematology and Oncology Special Interest Group:
http://aspho.org/membership/special-interest-groups/vascular-anomalies
Collaborative Research Advocacy for Vascular Anomalies Network
Lymphangiomatosis and Gorham's Disease Alliance (LGDA):
Lymphatic Education and Research Network:
National Organization for Rare Disorders (NORD):
Vascular Anomalies Canada
The Vascular Birthmark Foundation:
