We Heard You!

As the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking.

We developed a survey to gather the experiences of adult patients and collected responses over a period of six months in 2019. Preliminary data compilation has been completed and submitted for consideration of presentation as a poster at an upcoming medical conference in the United States.

Many thanks go to those who took time to complete the anonymous survey. Stay tuned for more developments!

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

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! ...
Read More

2019 MDBR Brings in Over $70K 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 $70,000.00 that will go to important research of GLA, GSD, KLA, and CCLA! ...
Read More

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 ...
Read More

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 ...
Read More

Birthday Party Raises $5000

On July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian's great aunt Linda Sutherland organized the event. Activities for the kids included face ...
Read More

2 Fundraisers in Dordrecht, the Netherlands for #LGDAwareness Day 2018

Cruising for Ella One of the fundraising events taking place for #LGDAwareness Day is Cruising for Ella on May 25th. This is a spectaculair experience from the water while watching old steam ships come by. Dinner and drinks included! Register: varenvoorella@gmail.com. Live for Ella Three bands from the Netherlands will ...
Read More
Loading...

Where are the Patients?

The pins on the map represent the state or province where at least one patient known to the LGDA lives; more than one patient may live in the state or province marked by a pin. Zoom in and drag the map around to view more details.