Special Support Group Meeting
Our May 28th support group will discuss family planning and reproductive health at 11:00 am Eastern Time.
This is open to patients between the ages of 18 – 40. Register Now.
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.
Must be over 18 years of age or older. Open to US and non-US participants. Questions – Contact Bryan Sisk, MD at email@example.com.
Young Investigator Grant
The Orphan Disease Center’s Young Investigator grant is a $25,000, one-year award designed to support early career researchers, such as postdoctoral and clinical fellows or instructors, pursuing promising research ideas related to lymphatic anomalies.
These grants are made possible by the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA and LGDA Europe) and the Lymphatic Malformation Institute (LMI) with funds raised through the Million Dollar Bike Ride.
The letter of intent is due by Friday June 3 with full applications due by Friday July 22.
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.
Millennial Life Group
Millennial Support Group Meeting!
Come and express your concerns, give, and receive insight on how things are going.
Held the last Saturday in each month from 11:00 am to 12:00 pm ET.
Next group meetings:
The group is sponsoring a special topic support group meeting.
Click above for details.
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.