Jo Wright
@jowright1.bsky.social
Parent carer, creative thinker, community supporter. Advocate for improved understanding of living with ultra rare genetic conditions, which often remain undiagnosed.
Proud to have helped represent #patientvoice in #raredisease at the Festival of Genomics and Biodata last week thanks to the #Eppigen research project kindly funded by @wellcometrust and also as part of the @genomicsengland #participantpanel
February 4, 2025 at 4:40 PM
Proud to have helped represent #patientvoice in #raredisease at the Festival of Genomics and Biodata last week thanks to the #Eppigen research project kindly funded by @wellcometrust and also as part of the @genomicsengland #participantpanel
For International Day of Persons with Disabilities I'm sharing a short animation my daughter made about #undiagnosed #genetic conditions youtu.be/szJjW3T2WIs?...
What is being Undiagnosed?
YouTube video by Jo Wright
youtu.be
December 3, 2024 at 11:44 AM
For International Day of Persons with Disabilities I'm sharing a short animation my daughter made about #undiagnosed #genetic conditions youtu.be/szJjW3T2WIs?...
Keeps me out of trouble (for a while!)
December 1, 2024 at 4:37 PM
Keeps me out of trouble (for a while!)
It starts with people, always.
November 25, 2024 at 10:29 PM
It starts with people, always.
Don't know what I'm doing here but had enough of the negativity on the other place. Hoping that communities will rebuild here.
November 24, 2024 at 7:17 PM
Don't know what I'm doing here but had enough of the negativity on the other place. Hoping that communities will rebuild here.