Author Archives: Admin

Give Warriors Hope 2016

As a result of the generosity of supporters like yourself this past year, 2016 is poised to be a breakout year for lymphangiomatosis and Gorham’s disease research but we will need your help to make it happen.   In May of this year our supporters helped Team LGDA and our research partner, the Lymphatic Malformation Institute (LMI), raise $200 thousand

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Bike Ride Raises $200K for Research

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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Rare Lung Disease Week II – View Recorded Webinar

  As part of “Rare Lung Disease Week at the ATS” and in conjunction with PAR partner the Lymphangiomtosis & Gorham’s Disease Alliance, the ATS PAR presented a live webinar on Wednesday, August 5, 2015. If you were unable to join the webinar, it was recorded and can be viewed by clicking here. The topic will be Pulmonary Lymphangiomatosis: Clinical

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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 (IACT), which was enacted in 2010 and allows those with

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21st Century Cures

  U.S. House Passes 21st Century Cures Act; NIH Funding Increase Included Friday, July 10, 2015 – The U.S. House of Representatives today has passed the 21st Century Cures Act, a large health research bill aimed at speeding the development of new treatments and cures, by a vote of 344–77. The legislation, drafted by the House Energy and Commerce Committee,

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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 the National Institutes of Health working together to accelerate clinical

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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 invited to speak at ASPHO this year.  

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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 government’s response to this national public health issue. Featured speakers

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