Answering the ShrugWhen 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#publicationsAnswering the Shrug
Finding ConfidenceScientific Director Tanya Brown shares her story of growing in confidence as a scientist, inspired by her mother's resilience and perseverance.#patient-driven research#research agenda/strategy#research network#publicationsFinding Confidence
That 'Spinning Room' MomentThis 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#publicationsThat 'Spinning Room' Moment