Category Archives: Advocacy

LGDA to Participate in Trans-NIH Lymphatic Coordinating Committee (TNLCC)

Advocacy, Awareness, Latest News, LGDA Mission

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has been invited as the newest guest organization of the Trans-NIH Lymphatic Coordinating Committee (TNLCC). Dr. Michael Kelly, the Chief Medical Officer will represent the LGDA and our patient community in meetings with this important research committee. In 2002, the Trans-NIH Lymphatic Coordinating Committee was formed to enable program staff across NIH to

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Advocacy Network for Vascular Anomalies

Advocacy, Latest News

The LGDA and Klippel-Trenaunay Support Group have joined together to form the Advocacy Network for Vascular Anomalies (ANVA). Through this new effort ANVA member organizations will present a unified voice for all vascular anomalies patients to facilitate collaboration among clinical and research networks.  Advocacy organizations for vascular anomalies patients interested in joining ANVA may contact us for more information.

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Finding Help and Support

Advocacy, Awareness, Community News & Events, Left, Living with Lymphangiomatosis & Gorham's, Warriors in the News

Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps.  Knowing that you can talk to someone that understands – helps.  Being able to share your experiences so others can learn from it – helps.  So why is it still the case that after being diagnosed with a rare disease you are

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Family Hosts World #LGDAwareness Event

2017 News, Advocacy, Awareness, Community News & Events, Feature, Latest News, Warriors in the News

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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Rare Disease Day in Scotland

2017 News, Advocacy, Feature, Latest News, Living with Lymphangiomatosis & Gorham's

Alfie Milne Lymphangiomatosis Trust founder Tracy Milne, was asked to speak about her experience in parenting a child with a rare disease at an event in Aberdeen, Scotland, on Rare Disease Day 2017. She has very graciously given permission for us to share the remarks she made at that event:   When your child is given the diagnosis of lymphangiomatosis,

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Michigan Rare Disease Day Event

2017 News, Advocacy, Feature, Latest News, Legislative Action

Advocates Visit Michigan State House to Lobby for Rare Disease LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan.  This Council will give rare disease patients a voice in state government and provide educational

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Ensuring Access to Clinical Trials (EACT) Act Passes Senate

2015 News, Advocacy, Latest News, Legislative Action

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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