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 our very first global event, where it doesn’t matter where
» Read moreIn 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 community advocates have jointly collaborated with our medical advisors to
» Read moreSince 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 to help. When he was invited to participate in his
» Read moreA 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 Lymphatic Malformation Institute (LMI); and the willingness of patients to
» Read moreGorham-Stout disease (GSD) is characterized by progressive bone destruction and proliferation of lymphatic vessels. In 2016, Andrea Del Fattore, PhD, and Andrea Bartuli, MD, and their team at Bambino Gesù Children’s Hospital, in Rome, Italy, were awarded funds raised for a research study through the LGDA’s and LMI’s participation in the Million Dollar Bike Ride (MDBR). The goal of the
» Read moreRare Disease Week on Capitol Hill (February 25 – 28, 2020) brings rare disease community members from across the United States together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. We hope to have patients and families from across the country joining LGDA Director of Patient Programs Lisa Klepper in representing
» Read moreWe 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 moreThe 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.
» Read moreWe 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 Disease Center issued its RFA for this funding cycle. The
» Read moreIt’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 through other channels. Every dollar donated to reach our goal
» Read more