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
» Read moreThe 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 Bone Physiopathology Laboratory at Bambino Gesù Children’s Hospital in Rome.
» Read moreThe 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 position, Dr. Kelly will provide strategic oversight for foundation
» Read moreDr. 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 Michael had a high fever. It was unlike any “kid”
» Read moreDue 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
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