Research is necessary to know what is causing GLA/GSD and find effective therapies. Most publications are case reports, because there are not so many with this rare disease. An overview of publications and reports can be found at www.lgdalliance.org.
International LGDA Registry
When you register as a patient in the International LGDA Registry for Lymphatic Malformations you are helping researchers worldwide unlock the mysteries of lymphangiomatosis and Gorham’s disease to find a treatment and a cure.
The Lymphatic Malformation Institute (LMI) is a nonprofit organization whose mission is to improve the clinical care of patients with lymphangiomatosis and Gorham’s disease. LMI funds research focused on identifying effective therapies for treating these rare disorders of the lymphatic system.
The Vascular Anomalies Center at Boston’s Children’s hospital has established a registry for patients with rare and complicated lymphatic conditions.
Please visit www.lgdalliance.org for an overview of publications in several scientific journals, such as Journal of Pediatric Hematology/Oncology, Pediatric Blood Cancer and Pediatrics.
The Lymphatic Malformation institute (LMI) has funded a genetic and genomic analysis in patients affected by Gorham’s disease and lymphangiomatosis at the Institute of Medical and Molecular Genetics (INGEMM) of Madrid, Spain. Read more…
Dr. J. Roessler fromt the University Children’s Hospital Freiburg, Germany published an article in november 2015.Citation: Rössler J, Saueressig U, Kayser G, von Winterfeld M, Klement GL. Personalized Therapy for Generalized Lymphatic Anomaly/Gorham-Stout Disease With a Combination of Sunitinib and Taxol. Journal of Pediatric Hematology/Oncology. 2015;37(8):e481-e485. doi:10.1097/MPH.0000000000000436.
The American based LGDA has a full list of worldwide research www.lgdalliance.org/research/.