Category Archives: Feature

Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill 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 the LGDA for events held

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2019 MDBR Brings in Over $60K for Research

We 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

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LGDA and LMI Announce 2018 UPenn Orphan Disease Center Million $$$ BikeRide Research Awards

The LGDA and our partner, the Lymphatic Malformation Institute/LMI, are pleased to announce the selection for research awards  for the coming year for the study of Gorham-Stout disease/GSD and generalized lymphatic anomaly/GLA (formerly lymphangiomatosis) from our 2018 UPenn Million $$$ BikeRide.  Thanks to our community of generous supporters, including special help from our affiliate LGDA-Europe we raised – with matching

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Transition from Pediatric to Adult Care

Representing 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

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Inaugural LGDA Science Award

For 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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Birthday Party Raises $5000

On 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

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LGDA Hosts First Non-Event Fundraiser

  You read that correctly. Our Non-Event is guaranteed to please everyone everywhere because you’re doing whatever you want, which may or may not include absolutely nothing. We’re not holding an event. We’re not booking a hall, picking a menu, hiring entertainment, scheduling activities, twisting arms to get volunteers, hoping for good weather and crossing our fingers people find time

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2 Grants Available for GLA/GSD Research

The Orphan Disease Center (ODC) at the University of Pennsylvania invites researchers to participate in the 2017 Million Dollar Bike Ride Pilot Grant Program.  The program is now open and offering 33 different research grant opportunities focusing on 23 different rare diseases.   This program provides a one‐year grant to support research related to a rare disease represented in the

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