Emily parla e viene premiata al Global Genes RARE Patient Advocacy Summit

Catch the livestream on Friday, September 23rd at 4pm EST through Rare University’s platform.

Today, there is nowhere that Emily would rather be than among other esteemed rare disease stakeholders at the fifth Global Genes RARE Patient Advocacy Summit in Huntington Beach, California. Emily is attending not only as a keynote speaker but also as an honoree!

This summit is truly a game changer. Patients, caregivers, and advocates come together from around the world to learn the tools they need to take actionable next steps, to continue to disrupt, to dream, to believe and to discover. Like Emily, the hundreds of people who attend the Global Genes conference are tirelessly working on precision medicine initiatives that will achieve the results they need to change their lives. Global Genes, the sponsor of this Summit, is laser focused on patient advocacy. Their mission is to eliminate the challenges of rare disease by building awareness, educating and connecting advocates so they can become activists for their disease.

At the Saturday night gala event, Global Genes will honor Emily as a RARE Champion of Hope in the category of Advocacy. More than 350 individuals and organizations from around the world were nominated for this award, and the honor of being one of just TWELVE extraordinary people chosen to receive this prestigious award is incredibly humbling and thrilling!

In addition, Emily will deliver a keynote fireside chat during the conference alongside Matt Might, President of the NGLY1 Foundation, with moderator Daniel Levine, Principal at Levine Media Group. Emily and Matt will speak about precision medicine and its significance for the rare disease community — how patients can best engage with their own diagnoses and affect real change.

The numbers are staggering, yet few of us realize just how common rare diseases can be. We call them “rare,” yet if we look around, it is likely we know someone who is affected by these diseases — 1 in 10 Americans, 30 million people in the United States, and a staggering 350 million people around the world. 

Global Genes represents the best of rare disease thought leaders and this year, they are providing hope and encouragement to Emily and her Entourage. What an incredible honor to be a part of this event!

You can keep up with Emily’s California trip by following her on Twitter (@EmilyKG1), Instagram (@EmilysEntourage) and Snapchat (EmilysEntourage). You can livestream Emily’s panel on Friday, September 23rd at 4pm EST through Rare University’s platform.