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 is now VIRTUAL!

2019 Team LGDA & LMI

Due to the recent COVID-19 outbreak, and social distancing recommendations, the Million Dollar Bike Ride is going VIRTUAL! The activities our supporters choose to raise funds and awareness can be completed over time and in any place.

Want to ride your stationary bike or walk/run on your treadmill in the safety of your home? Go for it!

Live in an area where you can ride/walk/run outdoors and maintain social distancing? Go for it!

Now in its 7th year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases.

Click here to Support Team LGDA & LMI Today!

Click here for more details on this event and how you can help

 

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.

Featured News & Events

Warriors in the News

Supporting the Mission

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

Donor Fair Raises Thousands for LGDA

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 to Stanford for her treatment more than 2 dozen times. When Cece, now 2 years old, was diagnosed, Mr. Thomas' coworkers rallied around the family ...
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2019 Scientific Year in Review

A number of research studies were published in 2019 that will benefit patients around the world with complex lymphatic anomalies (CLAs). Below is information about about some key projects that were made possible through the financial support of patients, their families, friends of the LGDA and its research partner, the ...
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Rennie Family Fundraiser

We thank the Rennie family for their continuing support of the LGDA through their annual golf outing in honor of their son and brother, Matt Rennie. This year's event raised $2500.00 (US) that will benefit LGDA programs! ...
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2019 MDBR Brings in Over $60K for Research

We want to thank Team LGDA & LMI and all of you who supported them in the 2019 Million Dollar Bike Ride. Including matching funds, the event raised more than $60,000.00 that will go to important research of GLA, GSD, KLA, and CCLA! UPDATE: On August 22, 2019 the Orphan ...
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2019 Million Dollar Bike Ride

It's time again for the Million Dollar Bike Ride! Now in its sixth year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases. In addition, the requests for proposals for research have identified other worthy projects that LGDA & LMI have funded ...
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LGDA Comedy Night

The LGDA Wisconsin group is holding its eighth annual fundraiser, this time a professional improv comedy night by ComedySportz Milwaukee. Wisconsin events have raised more than $130,000 for the LGDA so far. For more information or to sign up, visit http://weblink.donorperfect.com/ComedySportz2018. See the LGDA Wisconsin Facebook page here: https://www.facebook.com/lgdagolfouting/ Register now for ...
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