Awareness News


 

Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill (February 25 - 28, 2020) brings rare disease community members from across the United States together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. We hope to have patients and families from across the country ...
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Birthday Party Raises $5000

On July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian's great aunt Linda Sutherland organized the event. Activities for the kids included face ...
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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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LGDA Represented at Rare Diseases Day 2018

On February 24, 2018, Texas Children's Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center ...
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Star Wars Dark Side Marathon

The LGDA is proud to have Caitlin Havener join us in fighting against GLA and GSD. She will be running a half marathon during the Star Wars Dark Side Marathon at Disney World this April while raising money for the LGDA. In 2016, Caitlin recognized that she was not living ...
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