Search CZI Rare As One Archive

Found 2 bookmarks

Newest

Answering the Shrug

Answering the Shrug

When a doctor offers only a shrug in response to her daughter’s exam, Yssa DeWoody sets off on her path to becoming an advocate.

#parenting a child with a rare disease #improving diagnosis #patient-driven research #publications

Answering the Shrug

That 'Spinning Room' Moment

That 'Spinning Room' Moment

This is a story about one family's rare disease journey and the birth of a community.

#community engagement #parenting a child with a rare disease #building a rare disease foundation #improving diagnosis #patient-driven research #social media/disease awareness #research network #publications

That 'Spinning Room' Moment