Gorham-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 moreAs 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 have developed a survey to gather your experiences as
» Read moreSenator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies
» Read moreRepresenting the LGDA at the 10th Annual Health Care Transition Research Consortium Research Symposium and the 19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, in the Texas Medical Center were LGDA Director of Patient Programs, Lisa Klepper, and LGDA board member, Tiffany Ferry. The meetings were held October 24-26, 2018 and co-hosted by Baylor College
» Read moreFor extraordinary accomplishments in discovery and advancement in the field of lymphatic science for the benefit of our worldwide patient community presented to Michael T. Dellinger, PhD Assistant Professor Division of Surgical Oncology Department of Surgery Hamon Center for Therapeutic Oncology Research UT Southwestern Medical Center Dallas, Texas The LGDA’s award for a scientist was made at the 2nd
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