Press Releases

Rare Disease Champions to be Honored at Global Genes’ 8th Annual RARE Champion of Hope Celebration

August 1, 2019

Rare Disease Champions to be Honored at Global Genes’ 8th Annual RARE Champion of Hope Celebration

Master of Ceremonies Allie LaForce, ESPY 2019 Winner Coach Rob Mendez, Actress Madison McLaughlin, and more in attendance to honor the 2019 awardees

[Aliso Viejo, Calif.] August 1, 2019 — Global Genes® is honoring the incredible work of rare disease advocates from around the world at the 8th Annual RARE Champion of Hope Celebration taking place the evening of Friday, September 20, 2019, at the Sheraton San Diego Hotel & Marina in California. The annual blue carpet event follows the two-day RARE Patient Advocacy Summit, the world’s largest educational event for rare disease patients and advocates. 

TNT basketball reporter Allie LaForce joins Global Genes’ celebration for the RARE Champions of Hope Awards as the Master of Ceremonies. LaForce and husband, Houston Astros pitcher Joe Smith, founded HelpCureHD after Smith’s mother was diagnosed with Huntington’s Disease (HD) in 2012. Their foundation is committed to improving the quality of life for those living with HD. 

LaForce will be joined by special guest and 2019 ESPY Jimmy V Award recipient, Coach Rob Mendez. Mendez, who has the rare disease tetra-amelia syndrome and was born without arms and legs, will share his extraordinary story of becoming a football coach. 

Presented by Eversana, the rare disease celebration will include a performance from Sing Me a Story presented by sponsor Horizon Therapeutics and feature recording artist, Rachael Davis.  The awards will be attended by avid supporters of the rare disease community including Global Genes ambassador and rare disease advocate, Madison McLaughlin, actress known for the CW’s Arrow and Supernatural, Shaka Smith, actor and fitness model living with Hemophilia, and stars from the Emmy honorable television series My Last Days Travis Flores and Marinda Davis

According to the National Institutes of Health (NIH), more than 30 million people in the United States are living with rare diseases. This equates to one in 10 Americans affected by the more than 7,000 rare diseases. Global Genes’ RARE Patient Advocacy Summit is a source of motivation and activation for the families whose lives have been impacted by a rare disease. For a full list of Global Genes 2019 Summit sponsors and more details on the event please visit RARE Patient Advocacy Summit


About Global Genes® 

Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 350 million people affected by rare disease around the globe. To date, we’ve educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided $400,000 in support for innovative patient impact programs. This is just the beginning of what we can achieve together. Visit to get involved today.