Up-to-date information on the activities of the LGDA, as well as news and events of interest to patients and professionals.     Older News and Event Topics On your marks, get set, go . . . On your marks, get set, go . . . Register NOW for 1st LGDA Patient & Family Conference – […]


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Educating patients, their families, healthcare professionals, and policymakers is at the core of our mission to improve patient care.

Ways to Give

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Everything the LGDA does is made possible by the efforts of generous individuals who believe in our mission.

Coming Events


February 2016

Monday, February 29  - Rare Disease Day


March 2016

Wednesday - Thursday, March 16 - 17 - ATS Hill Day - Washington, DC


April 2016

April 21- 22 - World Orphan Drug Congress - Washington, DC


May 2016

Saturday, May 7 - Million Dollar Bike Ride - Philadelphia, PA

May 11-14, 2016 -  ASPHO's 29th Annual Meeting - Minneapolis, MN

Saturday, May 13 - LGDA Golf Outing - Green Bay, Wisconsin

May 13 - 18 - American Thoracic Society International Conference - San Fransisco, California

Previous Events

  • 2015 webinar feature photo2

    Rare Lung Disease Week II – View Recorded Webinar

      As part of “Rare Lung Disease Week at the ATS” and in conjunction with PAR partner the Lymphangiomtosis & Gorham’s Disease Alliance, the ATS PAR presented a live webinar on Wednesday, August 5, 2015. If you were unable to join the webinar, it was recorded and can be viewed by clicking here. The topic […]

  • Walk With Ella 1

    Alcoa Pittsburgh Takes a Walk with Ella

    On October 27, 2014, employees at Alcoa’s Pittsburgh office joined together and walked 1-mile around the North Shore as part of the “Take a walk with Ella” fundraiser.

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Support Information

LGDA is here to help you find resources and to provide support to patients and families living with lymphangiomatosis & Gorham's disease. If you need help,

Contact Us

LGD Allliance
19919 Villa Lante Place
Boca Raton, FL 33434
Phone: (844) 588-5771 (toll free)

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