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Newest

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?

Finding Confidence

Scientific 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 #publications

Finding Confidence

Reason to Hope

When Melissa Chaikof receives first learns that her daughters are profoundly deaf and then, when they are older, that they are also going blind, she cannot sit back and wait for others to find a cure.

#parenting a child with a rare disease #genetic disease #improving diagnosis #animal models #clinical trial #research network #research agenda/strategy

Reason to Hope

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