Category Archives: 2015 News

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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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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