We are partnering with the Global Genes – Allies in Rare Disease , one of the leading rare and genetic disease patient advocacy organizations in the world, to bring awareness and promote legislation to find treatments for the thousands of rare diseases that affect children.
We have met with our legislative representatives on multiple occasions to promote legislation to find treatments for the thousands of rare diseases that affect children.
One of our most popular events, our World Rare Disease Day Jeans for Genes school event, was created to promote awareness within our community and to bring to light the devastating affects rare diseases have on children.
Thank you U.S. Senator Dean Heller for recognizing our dedication for Nevada’s rare and medically complex children.
Other advocacy and awareness events we have participated in are:
- Nevada Disabilities Conference
- Global Genes RARE Patient Advocacy Summit
- Rare Disease Legislative Conference
- 21st Century Cures Initiative
- Genetic Rare and Immune Disorders Conference
- WORLD Symposium
- National Organization for Rare Diseases Summit
- “Run for the House” – Ronald McDonald House of Greater Las Vegas
- UNLV Multicultural Community Event
- “Walk for Wishes” – Make a Wish of Southern Nevada
- Quarterly Dinners at Ronald McDonald House of Greater Las Vegas
- Multiple TV News appearances on Fox 5, CBS 8, NBC 3, and ABC 13 Las Vegas stations
