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 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 moreOn July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian’s great aunt Linda Sutherland organized the event. Activities for the kids included face painting, animal balloons, crafts, and a Mad Scientist demonstration. Cleveland
» Read morePresented by Matt Hawkins, MD, Director – Pediatric Interventional Radiology, Children’s Healthcare of Atlanta at Egleston; Medical Director – Vascular Anomalies Clinic, Children’s Healthcare of Atlanta; Assistant Professor – Emory University School of Medicine Dept of Radiology and Imaging Sciences Abstract: Diagnostic imaging has become the primary means by which a number of lymphatic anomalies are diagnosed. More specifically, recent
» Read morePresented by Miikka Vikkula, M.D., Ph.D., Professor of Human Molecular Genetics, de Duve Institute, University of Louvain, Brussels, Belgium, at the LGDA Patient & Family Conference, 27 July 2018. Abstract: The circulatory system consists of two highly-branched tubular structures: the blood vessels and the lymphatic vessels. These systems are essential for the transport of fluids, gas, molecules and cells to
» 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 moreThe LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. This year we have invited medical professionals to share with the patient
» Read moreOn February 24, 2018, Texas Children’s Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center at TCH, Dr Ionela Iacobas, hosted the exhibit for vascular
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