The heart behind Handbasket Haven
Discover the personal journey that ignited our passion for rare disease advocacy, especially for those navigating the unknown of an undiagnosed condition.
Why I advocate: a personal journey
My grandson carries a genetic variant so rare, it's only been documented in two people worldwide. For us, there was no existing roadmap, no established community, and no doctor who had encountered it before. This stark reality, faced by thousands of families, propelled me into advocacy.
Our vision: connected, not isolated
No family should ever feel alone in this journey. I envision a future where families find each other, access reliable information, and connect with those who have already navigated similar paths. A community where 'rare' signifies connection, not isolation.
A future of support and understanding
We champion early diagnosis, timely intervention, and treatment plans tailored to the individual. We advocate for insurance coverage that truly meets families' needs and for healthcare professionals who listen. Our goal is a system where patients and caregivers are recognized as the experts in the room, where 'undiagnosed' doesn't mean 'unsupported,' and 'rare' never means 'alone.'
"Handbasket Haven has been an incredible resource, offering guidance and a sense of belonging we hadn't found anywhere else. Their dedication is truly inspiring."
A grateful family from Spokane