Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps. Knowing that you can talk to someone that understands – helps. Being able to share your experiences so others can learn from it – helps. So why is it still the case that after being diagnosed with a rare disease you are
» Read moreIn May 2017, the LGDA and its counterparts in the UK and Europe conducted a weeklong campaign dedicated to raising awareness about GLA/lymphangiomatosis, Gorham-Stout disease, and KLA, which concluded with the very first #LGDAwareness Day on May 26, 2017. The theme for the week was “5 Words on Being Rare.” We asked patients, their families, and volunteers to select 5
» Read moreAlfie 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,
» 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 moreWith the registration at capacity, more than 110 patients and family members turned out for the very first Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference, held in Dallas, Texas, June 14-15, 2014. Attendees, including more than two dozen children, came from Europe, South America, and the United States and Canada. Five families attended who had lost a family
» 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 moreIf you’re in the San Diego area Saturday, May 17, 2014, make plans to stop by the International Conference of the American Thoracic Society and visit with representatives of the Lymphangiomatosis & Gorham’s Disease Alliance at its booth on PAR Row. This year’s event will focus on “Living Your Best Life with Lung Disease” and will be from 10 a.m. to 2
» 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
» Read moreIn early April 2013 the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in Shushufindi, Ecuador. Ladio spent two months in Amherst, Massachusetts, in
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