The Rare Disease Data Repository
https://TheRDDR.org
RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.
@calhoujd.bsky.social
Research Assistant Professor with Gemma Carvill (@CarvillLab on Twitter). Focus: epilepsy genetics. Twin. Ace cat dad. Occasional writer. I am only an egg. He/him.
@jillianmckee.bsky.social
child neurologist | epilepsy neurogenetics | digital health | machine learning/AI enthusiast | physician mom | @ChildrensPhila 🇨🇦🇺🇸
@cnsdrughunter.bsky.social
🧠🧬 Neuroscientist. Looking for new medicines for #CDKL5, #SCN1A, #SHANK3, #DHPS and other neurological #RareDiseases with #epilepsy
@clirinx.bsky.social
Clinical Research IT for Epilepsy & Rare Diseases Natural Hx Studies, Patient Registries, Electronic Data Collection Creator of The CRID and The RDDR Web: https://clirinx.com
@thecrid.bsky.social
https://TheCRID.org More data sharing, less data silos. CRID is a service that enables parents/patients create their own unique universal ID for clinical research.
@curechd2.bsky.social
Patient advocacy group serving those affected by CHD2, a rare developmental & epileptic encephalopathy (DEE) associated w/Jeavons/EEM, photosensitive seizures, autism + intellectual disability. Accelerating research & supporting community www.curechd2.org
@sedoerr.bsky.social
@bsky.app
official Bluesky account (check username👆) Bugs, feature requests, feedback: support@bsky.app