Search CZI Rare As One Archive

Found 5 bookmarks

Newest

"Never Giving Up, One More Time ," by Nikki Stusick — The Story Collider

Science evolving is a good thing, but it’s not always the answer you hope for.

#building a rare disease foundation #genetic disease #genetics/genetic testing #improving diagnosis #parenting a child with a rare disease #patient-driven research #social media/disease awareness

"Never Giving Up, One More Time ," by Nikki Stusick — The Story Collider

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 network

Can We Fix It?

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

Finding My Community

Elizabeth 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 engagement

Finding My Community

Navigating a World Not Built for Us

Avery 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 research

Navigating a World Not Built for Us