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
» Read moreThe Vascular Anomalies Special Interest Group’s (SIG) mission is to improve the care of children and young adults with vascular anomalies through multicenter collaborative research. The goals of this special interest group include: current continued education to ASPHO membership in the diagnosis, treatment, and management of patients with vascular anomalies multicenter collaboration to establish standards of practice for patients with
» Read moreBROWN DEER, Wis. (September 6, 2014) – Intros are starting to be kept to a minimum. Now, it’s more like, “Great to see you again! How have you been?” Many of the regulars and their friends and family returned to the fourth annual LGDA Golf Outing this year. And while the LGDA’s major fundraiser added another $10,000 and is
» 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 more