Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
Courtney Felle (she/they) is the Young Adult Rare Representatives (YARR) Program Manager at the EveryLife Foundation for Rare Diseases. In their role, Courtney supports 200+ advocates between 16 and 30 years old, challenging them to become policy, advocacy and public speaking leaders.
Previously, Courtney has worked at the American Association of People with Disabilities (AAPD), the Administration for Community Living (ACL) in the US Department of Health and Human Services, and other organisations related to disability, chronic illness and social policy. In addition to rare disease, they are passionate about LGBTQIA+ rights, craftivism and bad reality television.
Your biggest motivation
I experienced an eight-year delay before my diagnosis with Hypermobile Ehlers-Danlos syndrome, and I want to ensure that future patients don’t have to endure the same hurdles. I am motivated by anger in pursuit of love. I believe every individual is already an advocate; they just have to unlock their power and connect to opportunities.
Your greatest achievement
2023 featured immense accomplishments from YARR members, from passing legislation for a funded Rare Disease Advisory Council in Indiana to spearheading a grassroots LGBTQIA+ rare disease coalition. I am so proud to support each and every YARR member. Their wins are my proudest wins.
What’s next to strive for?
Young adults are not simply the future generation of rare disease advocates. They are experts NOW, experiencing firsthand what it’s like to support rare disease therapy development, to face barriers accessing treatments, to transition to adult providers, and more. We need more spaces where young adult voices are valued in their full power.
Advice to other up-and-coming advocates
Although I am honoured to have my work featured in RARE Revolution Magazine, I am not an exceptional hero. At the end of the day, I am someone personally affected by rare and chronic conditions who shows up every day, ready to care for all of us in the community. Use every opportunity you have, small or large, to share what matters to you. Collaborate with others. Leadership is an acquired skill.
The tide will have turned for the rare disease community when...
Patients can receive a timely diagnosis, access FDA-approved treatment for their condition, and find affordable and inclusive services without thinking twice along the way.
Socials
Instagram: @HearUsYARR @CourtneyFelle
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