Advocacy News


 

Rare Disease Day in Scotland

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: ...
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Michigan Rare Disease Day Event

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 ...
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Ensuring Access to Clinical Trials (EACT) Act Passes Senate

On July 16, 2015, the Ensuring Access to Clinical Trials Act (EACT), S 139/HR 209, which will permanently remove a barrier to clinical trial participation for those with rare diseases was passed in the United States Senate by unanimous consent. EACT makes permanent the Improving Access to Clinical Trials Act ...
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Rare Lung Diseases Consortium

The recently formed Rare Lung Diseases Consortium (RLDC) is holding a planning meeting in July 2015 to prepare for a national summit of all patient advocate organizations and the specialists in pulmonary science and medicine anticipated for 2016. The RLDC is a unique collaboration among patient organizations, clinical investigators and ...
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ASPHO-SIG Meeting

At it's meeting in May 2015, LGDA President Jack Kelly spoke to a group of about 100 participating oncologists in American Society of Pediatric Hematology/Oncology's (ASPHO) Vascular Anomalies Special Interest Group, many of whom treat our patients with lymphangiomatosis and Gorham-Stout disease (GSD). Several of the vascular anomalies foundations were ...
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LGDA on Capitol Hill

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 ...
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