Tell Congress to Support the Orphan Drug Act

Last year, Congress cut one of the incentives for companies to manufacture orphan drugs contained within the ODA in half. We cannot let that happen again!

On November 16, 2018, a resolution affirming the importance of the Orphan Drug Act was introduced in the US House of Representatives.

Click the link in the image to learn more and offer your support for the ODA.

Featured News & Events

Warriors in the News

Supporting the Mission

All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA’s mission.

Events to Support Our Mission

LGDA Comedy Night

The LGDA Wisconsin group is holding its eighth annual fundraiser, this time a professional improv comedy night by ComedySportz Milwaukee. Wisconsin events have raised more than $130,000 for the LGDA so far. For more information or to sign up, visit http://weblink.donorperfect.com/ComedySportz2018. See the LGDA Wisconsin Facebook page here: https://www.facebook.com/lgdagolfouting/ Register now for ...
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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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2 Fundraisers in Dordrecht, the Netherlands for #LGDAwareness Day 2018

Cruising for Ella One of the fundraising events taking place for #LGDAwareness Day is Cruising for Ella on May 25th. This is a spectaculair experience from the water while watching old steam ships come by. Dinner and drinks included! Register: varenvoorella@gmail.com. Live for Ella Three bands from the Netherlands will ...
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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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Where are the Patients?

The pins on the map represent the state or province where at least one patient known to the LGDA lives; more than one patient may live in the state or province marked by a pin. Zoom in and drag the map around to view more details.