A special thank you to Clarissa Henke, NPKUA’s Advocacy Committee Co-Chair, for representing our PKU community on Capitol Hill during Rare Disease Week with the EveryLife Foundation for Rare Diseases.
Reflecting on her experience in Washington, D.C., Clarissa shared how meaningful it was to connect with others across the rare disease community. She joined more than 700 advocates and 165 patient organizations nationwide to make their voices heard.
“I have always felt so blessed by how awesome our PKU community is, but I learned that the whole rare disease community is the same way,” she said. “Advocating alongside people who share similar goals for themselves or for loved ones living with a rare disease was a highlight of our PKU journey.”
Clarissa emphasized the value of the experience, noting how supported and prepared she felt throughout the week. “It’s something I will continue to prioritize every year,” she added. “If you can attend EveryLife’s Rare Disease Week, I highly recommend it.”
Read more about the Everylife Foundation’s 2026 Rare Disease Week here.
Learn more about NPKUA’s advocacy opportunities here and in our March 2026 PKUniversity webinar, Advocacy in Action. Contact Sarah@npkua.org with any questions or to get further involved with NPKUA’s volunteer Advocacy Committee.