Category Archives: Advocacy

Family Hosts World #LGDAwareness Event

The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text.   Family from Dordrecht asks for awareness of rare disease Fifteen-year-old

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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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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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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

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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

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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.

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