Foundation News


Up-to-date information on the activities of the Lymphangiomatosis & Gorham’s Disease Alliance, as well as news and events of interest to patients and professionals.



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 ...
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2020 Million Dollar Bike Ride Research Award

The LGDA and the Lymphatic Malformation Institute (LMI), our research partner, are pleased to announce Andrea Del Fattore, PhD, has been awarded $81,965 to fund his project Understanding the effects of Sirolimus/Zolendronic acid treatment on bone remodeling activity in patients with Gorham-Stout disease. Dr. Del Fattore is the Head of ...
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Building Our Research Network

The LGDA is very pleased to announce the following new team members: Michael Kelly, MD, PhD, a pediatric hematology-oncology specialist with over twenty years’ leadership in the care of children and adults with vascular anomalies, joined the LGDA in June of 2020 as Chief Medical Officer. In this newly created ...
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Dr. Kimberley E. Steele serves the LGDA and LMI as Director of Patient-Led Research. She has shared the story of Michael's diagnostic journey, her perspective, and the video Michael made to tell his story. When Michael was just turning 6 years old, I received a call while at work that ...
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2020 VIRTUAL Bike Ride for Research

Due to the recent COVID-19 outbreak, and social distancing recommendations, the Million Dollar Bike Ride is going VIRTUAL!This will allow our supporters to choose the activities they want to do to raise funds and awareness and complete their goals over time. We would like to use this opportunity to have ...
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COVID-19 Questions and Answers for Complex Vascular Anomalies Families

In an effort to address concerns of those living with rare vascular anomalies, several patient advocacy organizations have compiled a list of frequently asked questions from our affected families concerning COVID-19. The medical advisors from the patient advocacy organizations worked together to prepare responses to these questions. The vascular anomalies ...
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News and Events by Year
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at:
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at:

2017 News

2016 News

2015 News

2014 News

2013 News

2012 News


Archived Newsletters

2010 Fall

Summer 2010

Summer 2009

1st Edition – Winter 2009