Author Archives: Admin

Rare Lung Diseases Week 2016

In 2016, the ATS Public Advisory Roundtable (PAR) continues its successful program “Rare Lung Disease Week at the ATS,” which represents a society-wide initiative to recognize the many rare lung disorders for which ATS PAR member organizations provide support and guidance to patients and their families. The week of July 17 – 23, 2016, has been designated Rare Lung Diseases

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2nd International Conference on GLA & GSD

The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) were proud to host the 2nd International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Disease. The conference was held at the W Hotel – Buckhead in Atlanta, GA from June 10-11, 2016. The conference was chaired by Dr. Ionela Iacobas (Texas Children’s Hospital) and Dr. Michael Dellinger (Research

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2015 MDBR Funds 3 Studies

  The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are proud to announce the three projects selected to receive the LGDA-LMI 2015 MDBR Rare Disease Research Grants. The LGDA and LMI joined together Saturday, May 9, 2015, in Philadelphia to participate in the 2nd Annual Million Dollar Bike Ride. Together the teams raised more than

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Snapshots of the Data

Since the International LGDA Registry for Lymphatic Malformations (LGDA Registry) first went online more than 200 patients living on 6 continents have joined. The charts in this post highlight some of what we’ve learned so far about these participants’ diagnoses; what percentage have disease in the chest, bones, abdomen, pelvis and skin; and how many report having disabilities related to

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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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