At Horizon, I had the opportunity to foster relationships with patient advocacy organizations working to enhance, elevate and support their initiatives that are so critically important to the rare disease community. It was this impact that made me realize I was an advocate well before I was on the Patient Advocacy team.
As I continued to do the work I love, I grew my role within #RAREis, a program that began as a social media campaign launched in 2017 to elevate, the voices, faces and experiences of the rare disease community. #RAREis connects patients and their families to resources that support, inform and educate them as they navigate their healthcare journey.
While every day looks different, the one thing that remains consistent is that I have the pleasure of connecting directly with patients, caregivers and advocates. It’s an honor to listen to stories others share within the rare disease community. It’s a privilege to learn from them; I get to understand the challenges they face. I’m inspired by the opportunity to make a difference by working with the rare disease community every day to create new programs and resources that aren’t currently available to best support their needs. What could be better than that?
It was through these experiences that led to the launch of the #RAREis Global Advocate Grant. The program is designed to support the rare disease community by providing financial assistance to global patient advocacy organizations working to advance, educate and address the needs of the community.
After launching in 2022, 30 organizations, spanning nine countries and representing 29 different rare diseases were awarded a $5,000 grant. Because of the impact it made on the community, this year’s Global Advocate Grant was launched on February 28 in honor of Rare Disease Day. And as we prepare to announce the 50 recipients later this month, I find myself reflecting on the equity it has built, the empowerment it has created and the advancements it will propel for the global community and how I get to do this every single day.