Rare 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 morePresented by Judith F. Margolin, MD, Texas Children’s Hospital, Houston, TX Patients and their families face a veritable alphabet soup of acronyms starting with diagnoses (GLA/GSD/KLA), including diverse tests for diagnoses and monitoring (e.g., PT, PTT, Factors I-XII, d-dimers, DIC, LIC), and culminating with a host of procedures and drugs (generic and brand names)! Many of these terms, drugs, and
» Read moreCruising for Ella One of the fundraising events taking place for #LGDAwareness Day is Cruising for Ella on May 25th. This is a spectaculair experience from the water while watching old steam ships come by. Dinner and drinks included! Register: varenvoorella@gmail.com. Live for Ella Three bands from the Netherlands will give a benefit concert on the 31st of May at
» Read moreTen-year-old Hunter Joiner of Florida was diagnosed in 2016 with lymphangiomatosis, also known as generalized lymphatic anomaly (GLA), and he wanted to do something to help everyone with the rare disease. So, he decided to sell t-shirts to raise money for the LGDA. When the fundraiser was over, Hunter had raised $250, which he sent to the LGDA with a
» Read moreWhen Julian Cardenas, a 10-year-old in New York, was assigned to complete a capstone project at the end of his academic year he decided on Gorham-Stout disease as his topic. Julian was diagnosed with GSD when he was just 2 years old and wanted to raise awareness about the disease and money for research. Julian’s efforts resulted in over $400
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