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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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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The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text. Family from Dordrecht asks for awareness of rare disease Fifteen-year-old
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Alfie Milne Lymphangiomatosis Trust founder Tracy Milne, was asked to speak about her experience in parenting a child with a rare disease at an event in Aberdeen, Scotland, on Rare Disease Day 2017. She has very graciously given permission for us to share the remarks she made at that event: When your child is given the diagnosis of lymphangiomatosis,
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Advocates Visit Michigan State House to Lobby for Rare Disease LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan. This Council will give rare disease patients a voice in state government and provide educational
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The 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
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The 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
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By 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
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In 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
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ATS Patient Voices 3: Their Stories, Their Words, a new ebook release by the American Thoracic Society Public Advisory Roundtable (ATS PAR), features the story of LGDA Warrior Megan Gray’s journey with lymphangiomatosis. Megan’s story will be familiar to many of those diagnosed with lymphangiomatosis and their families; the LGDA is grateful to Megan and her family for sharing it
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