Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organization
Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organizations including the FOGX1 Research Foundation, SynGAP Research Fund, , STXBP1 Research Foundation, Hereditary Neuropathy Foundation, and more. The Function platform enables drug and target discovery for rare genetic diseases.
ONCE UPON A GENE - The 12 Commandments to Guide You When You're Starting a Rare Disease Patient Advocacy Group. With Nasha Fitter and Mike Graglia
Effie Parks celebrated podcast Once Upon a Gene Episode 094: FOXG1 advocate Nasha Fitter and SYNGAP1 advocate Mike Graglia are leaders in the rare disease community and two of the top parent leaders in the advocacy game. In this episode, they're sharing their knowledge, expertise and experiences in an information-packed masterclass on how to build a rare disease patient advocacy group, get funding and forge a path to a cure.
Dallas Morning News: Where is Former American Airline CEO Tom Horton? Raising Awareness for a Rare Genetic Condition.
Horton jumped into the campaign to raise awareness for the rare FOXG1 syndrome after his infant granddaughter was diagnosed in 2020.
Global Genes Podcast: Empowering Rare Disease patients With Their Own Health Recods
Global Gene’s RareCast Podcast interviews our CEO and Co-founder about our innovative Ciitizen Natural History Study and how health records empower parents and caregivers to make sure researchers really understand our children’s condition.
Don't Miss the Latest on FOXG1 Research TV !
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How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care
The Ciitizen FOXG1 syndrome Natural History Study not only make managing care easier and gives parents control of thier children’s medical records, but also drives research and will help Biopharma to develop treatments for FOXG1 syndrome. Read how and why.
A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers
Soo-Kyung Lee, Empire Innovation Professor of Biology at the University at Buffalo, has been driven to focus greater attention on FOXG1 syndrome since her daughter, Yuna, was diagnosed with the neurological condition almost nine years ago.
Douglas Levere/University at Buffalo
Waitlist is Open for Next NHS Cohort
The new digital, FOXG1 Natural History Study is funded by the Chan Zuckerberg Initiative, powered by Ciitizen, and supported by the Orphan Disease Center is a groundbreaking approach to accelerating research for FOXG1 syndrome.
Incredibly Important Surveys for all FOXG1 parents to take!
As a community, we are accelerating discovery of new treatments and therapies for FOXG1 syndrome!
One way we are doing this is by launching validated surveys, which will give us critical data for clinical trials.
Introducing - FOXG1 Research Foundation Australia!
We are thrilled to announce the first official FOXG1 Research Foundation affiliate chapter in Australia, led by Steve Hille. Steve and his incredible team will lead all efforts in Australia to help support the research towards a cure for FOXG1 syndrome.