Advocacy News


 

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

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 ...
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Advocacy Network for Vascular Anomalies

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 ...
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Orphan Drug Act Resolution Introduced in Congress

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease ...
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Warrior Advocates for Others

After being diagnosed with GLA, this Warrior set out to become an advocate for others like herself. In June she participated in Family Advocacy Day, sponsored by Speak Now for Kids, on Capitol Hill to highlight the importance of children's health care. Leeya even interviewed Dr. Jennifer Arnold to learn more ...
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Finding Help and Support

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 ...
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#LGDAwareness Day 2018

The LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. This year ...
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