Support Group Meetings

Our Millennial Group is meeting at 11:00 am Eastern Time on:

  • July 30
  • August 27

 

The DISH support group is meeting at 10:00 am Eastern Time on:

  • July 9
  • August 13

 

Share your experiences

Share your experiences finding medical care for vascular anomalies in a study being conducted by Bryan Sisk, MD and Anna Kerr, PhD.

Learn more!

Must be over 18 years of age or older. Open to US and non-US participants. Questions – Contact Bryan Sisk, MD at siskb@wustl.edu.

 

International Registry for Lymphatic Malformations

Register a patient in the International LGDA Patient Registry for Complex Lymphatic Anomalies.

Help researchers worldwide unlock the mysteries of lymphangiomatosis and Gorham’s disease to find a treatment and a cure!

It’s a place where medical information, family history, and other related information from patients  is collected and stored for medical research and clinical trials to better understand these diseases and to develop new treatments.

Physician Guide for GLA, GSD, KLA and CCLA

LGDA and its partners, Lymphatic Malformation Institute and Alfie Milne Lymphangiomatosis Trust, brought together 52 physicians from 16 specialties to develop a consensus-based guidelines for comprehensive evaluation of the complex lymphatic anomalies (CLA) generalized lymphatic anomaly (GLA) previously called lymphangiomatosis, Gorham-Stout disease (GSD), kaposiform lymphangiomatosis (KLA), and central conducting lymphatic anomaly (CCLA). The results of that effort have now been published in the journal Pediatric Blood & Cancer.

Read the abstract here: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28036

Rare As One

We’re part of the Chan Zuckerberg Initiative’s (CZI) Rare As One Project — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.

The Project aims to strengthen the efforts of the selected patient-led groups and will help these communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. To support the project, CZI will provide funding of $450,000 over two years for each of the 30 selected organizations and will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.

Through Rare As One, the LGDA will further develop a natural history of complex lymphatic anomalies through three networks: patient, clinical and scientific.