On Wednesday, March 18, 2015, LGDA President Jack Kelly, joined other members of the Rare Bone Disease Advocacy Alliance (RBDAA) in leading a discussion about ways to improve the quality of life for those affected by rare bone diseases like Gorham’s disease and lymphangiomatosis through a strengthening of the federal government’s response to this national public health issue. Featured speakers
» Read moreLGDA President Jack Kelly to speak at Rare Disease Day Event The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media: Georgia Rare Disease Day State House Event Friday February 27, 2015 State Capitol
» Read moreATS 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
» Read moreAs a member of the Rare Bone Disease Patient Network (RBDPN), the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), and associate members of the RBDPN, participated in the National Bone Health Alliance/Rare Bone Disease Patient Network Workshop: Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone Diseases on September 11, 2014, in Houston, Texas.
» Read moreUpdate: If you missed the webinar on August 28, it is available for viewing on the ATS website. August 24 – 30, 2014 For the third consecutive year, Lymphangiomatosis and Gorham’s disease are being featured as part of Rare Lung Disease Week at the ATS. The feature of the week occurs on Thursday, August 28 when the Lymphangiomatosis and
» Read moreNORD to Present Awards at “Portraits of Courage” Celebration, May 8, 2014, in Washington DC Rare disease patients, patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the “Portraits of Courage Celebration” of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum
» Read moreWorld Orphan Drug Congress USA Heroes Wall For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the 30 heroes of the sector.
» Read moreLGDA Participates in ATS Hill Day 2014 In late March, ATS officers and patient representatives of the Public Advisory Roundtable (PAR), of which the Lymphangiomatosis & Gorham’s Disease Alliance is a member, visited Washington, D.C., to advocate for respiratory health as part of ATS Hill Day 2014. Events like the ATS Hill Day provide important opportunities for rare disease advocates
» Read more1st International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are pleased to share the publication of the Conference Report on the Proceedings of the First International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome. The conference was hosted by the LMI and the LGDA
» Read moreFive years ago I thought I was fighting an orphan disease on my own. Then I found an internet page about a little boy named Marcus that had passed away from the disease known as lymphangiomatosis. Then Marcus’s website led me to a website a couple years later that would change my life. That website was lgdalliance.org. On this website
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