Since their daughter was diagnosed with GLA in the summer of 2018, the Thomas family has made the 3 hour drive from their California home
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In an effort to address concerns of those living with rare vascular anomalies, several patient
LGDA is 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.
2020 Bike Ride for Research
It’s time again for the Million Dollar Bike Ride!
When: Saturday, June 13, 2020
Where: Philadelphia, PA, USA
Now in its 7th year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases.
Follow and share this event on our Facebook page and ask your friends to help support the research!
If you are interested in joining us in Philadelphia on June 13 to ride or to cheer on the team, we’d LOVE to have you! Just send an email to firstname.lastname@example.org and we’ll provide you with the details.
Physician Guide for GLA, GSD, KLA and CCLA
In June 2016 the 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
Advocacy Network for Vascular Anomalies Formed
The LGDA and Klippel-Trenaunay Support Group have joined together to form the Advocacy Network for Vascular Anomalies (ANVA). Through this new effort ANVA member organizations will present a unified voice for all vascular anomalies patients to facilitate collaboration among clinical and research networks. Advocacy organizations for vascular anomalies patients interested in joining ANVA may contact us for more information.
The Power of One
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Warriors in the News
Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps. Knowing that you can talk to someone
All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA’s mission.
Events to Support Our Mission