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
» 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 American Society of Pediatric Hematology-Oncology Vascular Anomalies Special Interest Group (ASPHO-VA-SIG) is composed of physicians and other health care professionals in North America who have interest in vascular anomalies, the large umbrella under which generalized lymphatic anomaly (GLA – previously known as lymphangiomatosis), kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) are classified. Representatives of advocacy groups such as the
» Read moreBy Scot Wiesner & Beth, Ryan and Claire Mantey After 5 years of being a part of the LGD Alliance Golf Outing in Wisconsin as an organizer and enjoying the camaraderie of everything it has become, we are proud to say that we are well over $100,000 in funds raised for the LGD Alliance. This event has become so much
» Read moreCameron C. Trenor, III, MD, Assistant Professor of Pediatrics, Harvard Medical School, and Director of Clinical Research for the Vascular Anomalies Center at Boston Children’s Hospital, was presented with the 4th Founder’s Award during the 2nd International Conference on Generalized Lymphatic Anomaly (GLA) and Gorham-Stout Disease in Atlanta, Georgia, June 10, 2016. Created by LGDA Founder Jana Sheets, the award
» Read moreIn 2016, the ATS Public Advisory Roundtable (PAR) continues its successful program “Rare Lung Disease Week at the ATS,” which represents a society-wide initiative to recognize the many rare lung disorders for which ATS PAR member organizations provide support and guidance to patients and their families. The week of July 17 – 23, 2016, has been designated Rare Lung Diseases
» 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
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