When 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
» Read moreThe 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
» Read moreThe LGDA and its research partner, Lymphatic Malformation Institute (LMI), joined together again on May 20, 2017, to take part in the Million Dollar Bike Ride to raise awareness and critical research dollars. This is the third year for Team LGDA to participate in the event. Thanks to its dedicated supporters, Team LGDA in 2017 will award more than $100,000
» Read moreThe Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are proud to announce the two projects selected to receive the LGDA-LMI 2016 MDBR Rare Disease Research Grants. The LGDA and LMI joined together Saturday, May 7, 2016, in Philadelphia to participate in the 3nd Annual Million Dollar Bike Ride. Together the teams raised $80,000, which
» Read moreThe Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) were proud to host the 2nd International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Disease. The conference was held at the W Hotel – Buckhead in Atlanta, GA from June 10-11, 2016. The conference was chaired by Dr. Ionela Iacobas (Texas Children’s Hospital) and Dr. Michael Dellinger (Research
» Read moreThe Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are proud to announce the three projects selected to receive the LGDA-LMI 2015 MDBR Rare Disease Research Grants. The LGDA and LMI joined together Saturday, May 9, 2015, in Philadelphia to participate in the 2nd Annual Million Dollar Bike Ride. Together the teams raised more than
» Read moreSince the International LGDA Registry for Lymphatic Malformations (LGDA Registry) first went online more than 200 patients living on 6 continents have joined. The charts in this post highlight some of what we’ve learned so far about these participants’ diagnoses; what percentage have disease in the chest, bones, abdomen, pelvis and skin; and how many report having disabilities related
» Read moreIn May 2015, the LGDA and its research partner the Lymphatic Malformation Institute (LMI) participated in the 2nd Annual Million Dollar Bike Ride sponsored by the Penn Medicine Orphan Disease Center (ODC), which promotes the development of therapies across a broad range of orphan diseases, and Rare Disease Cycling, a national non-profit cycling team whose members race and ride to
» Read moreU.S. House Passes 21st Century Cures Act; NIH Funding Increase Included Friday, July 10, 2015 – The U.S. House of Representatives today has passed the 21st Century Cures Act, a large health research bill aimed at speeding the development of new treatments and cures, by a vote of 344–77. The legislation, drafted by the House Energy and Commerce Committee,
» Read moreThe recently formed Rare Lung Diseases Consortium (RLDC) is holding a planning meeting in July 2015 to prepare for a national summit of all patient advocate organizations and the specialists in pulmonary science and medicine anticipated for 2016. The RLDC is a unique collaboration among patient organizations, clinical investigators and the National Institutes of Health working together to accelerate clinical
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