Category Archives: Advocacy

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

» Read more

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.  

» Read more

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

» Read more

Georgia Rare Disease Day State House Event

Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature

» Read more

Capitol Hill Briefing

On Wednesday, March 18, 2015, LGDA President Jack Kelly, will join 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

» Read more

Orphan Drug Heroes

World Orphan Drug Congress USA Heroes Wall           For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the 30 heroes of the sector.

» Read more

ATS Hill Day

LGDA Participates in ATS Hill Day 2014 In late March, ATS officers and patient representatives of the Public Advisory Roundtable (PAR), of which the Lymphangiomatosis & Gorham’s Disease Alliance is a member, visited Washington, D.C., to advocate for respiratory health as part of ATS Hill Day 2014. Events like the ATS Hill Day provide important opportunities for rare disease advocates

» Read more

LGDA participates in 1st Rare Bone Disease Advocacy Day on Capitol Hill

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is a founding member of the newly created Rare Bone Disease Advocacy Alliance, a coalition of rare bone disease organizations committed to advancing research of rare bone diseases by working directly with Congress and the Executive Branch. On September 18, 2013, advocates from the LGDA and other Rare Bone Disease Advocacy Alliance (RBDAA)

» Read more

LGDA Intercedes to find help for Child in South America

In 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

» Read more

LGDA @ ATS International Conference

The American Thoracic Society International Conference – Meet the Experts session in Philadelphia on Saturday, May 18, 2013, was a great success for the lymphangiomatosis and Gorham’s disease community. In attendance were 3 patients, 4 parents of patients, 2 spouses of patients, 1 friend of a patient, and 3 physicians (pulmonologist, endocrinologist, and orthopedic surgeon)! For two and a half

» Read more
1 2 3