Can We Fix It?This is a story about fixing an impossible problem in an unexpected way.#parenting a child with a rare disease#community engagement#social media/disease awareness#drug repurposing#patient-driven research#building a rare disease foundation#research networkCan We Fix It?
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
The Power of Finding Your CommunityWhen Tracy Milne's young son is diagnosed with a rare disease, she finds hope in community.#parenting a child with a rare disease#community engagementThe Power of Finding Your Community
Finding My CommunityElizabeth Ann has trouble adjusting to a career at a non-profit, until something clicks about what it means to advocate for rare disease.#fundraising#social media/disease awareness#community engagementFinding My Community
How My Bad Dating History Led to Me Being a Rare Disease AdvocateDo you know what happens when a Type A fixer turns into a rare disease mom warrior? Then have a listen!#genetic disease#parenting a child with a rare disease#genetics/genetic testing#scientific conference#community engagementHow My Bad Dating History Led to Me Being a Rare Disease Advocate
Navigating a World Not Built for UsAvery Roberts is breaking down barriers tackling misconceptions surrounding disability and giving a loud voice to the, often-forgotten, rare disease community.#living with a rare disease#community engagement#social media/disease awareness#patient-driven researchNavigating a World Not Built for Us