12/19/2025
Every voice raised, every story shared, and every policy conversation started begins with someone choosing to advocate.
Meet Macy Brown—an adult living with X-Linked Hypophosphatemia (XLH) whose courage and voice are helping drive meaningful change for the rare disease community.
“After attending Rare Disease Week on Capitol Hill, I learned just how powerful advocacy can be when people come together with a shared purpose. Hearing personal stories—stories like mine—showed me how deeply rare diseases impact our lives, and how important it is for lawmakers to hear directly from us.”
— Macy
Macy attended Rare Disease Week on Capitol Hill, where she witnessed firsthand how sharing lived experiences can influence policy discussions and funding priorities. Through conversations with fellow advocates and lawmakers, she gained a renewed sense of connection and hope—realizing that even small conversations can lead to meaningful change for millions affected by rare diseases.
Born with XLH, Macy has faced a lifetime of medical challenges. As a child, she lived with bowed legs, constant bone and tooth pain, and spent significant time in hospitals, including undergoing corrective leg surgery. Over the years, XLH has also contributed to additional health complications, including hydrocephalus, Chiari malformation, spinal stenosis, tooth loss, and multiple surgeries.
Today, Macy lives in Maryland, where she was raised. She is married, the proud mother of three children, a son-in-law, and a loving grandmother. She shares her story to raise awareness about XLH and to advocate for better medical and dental coverage—so others living with this rare disease don’t have to fight alone.
Because of advocates like Macy, the XLH community’s voices are being heard—louder and stronger than ever before.
When you support the XLH Network, you help:
✦ Amplify patient voices in advocacy spaces like Capitol Hill
✦ Raise awareness about the real-life impact of XLH
✦ Push for improved access to medical and dental care
✦ Build connection, hope, and empowerment across the XLH community
Your support turns personal stories into collective action—and action into lasting change.
✨ Make a donation today and support advocacy efforts like Macy’s:
https://conta.cc/4pcOz7m
Thank you for helping support the XLH community. Together, we are shaping a future where every person living with XLH is heard, supported, and valued.
