ARRE Foundation

@nordrare.bsky.social

NORD is a patient advocacy organization leading the fight to improve the lives of rare disease patients. Alone we are rare. Together we are strong.® www.rarediseases.org

@rarediseasectn.bsky.social

HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.

@maddiegillentine.bsky.social

Geneticist | Research Director @ HNRNP Family Foundation Interested in all things rare disease. BA from Kalamazoo College | PhD from Baylor College of Medicine. Postdoc at UW |Former variant scientist.

@anneotation.bsky.social

Clinical geneticist and rare disease researcher at the Broad Institute and Boston Children's Hospital

@therddr.bsky.social

https://TheRDDR.org RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.

@varshneylab.social

Assoc. Prof. Interested in CRISPR, Zebrafish, Disease Modeling, Rare Diseases, and Neurodevelopmental Disorders. The opinions expressed here are my own.

@curesyngap1.bsky.social

SRF, est 2018, exists to improve the quality of life of SynGAP patients through the research and development.

@clementychow.bsky.social

henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab https://linktr.ee/clementchow

@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

@scn2a.bsky.social

"Families" is part of our name for a reason. Rare and devastating, SCN2A-related disorders affect the entire family. Our team of leaders strive every day and, in every way, to improve the lives of not only the patients, but the entire family.

@bsky.app

official Bluesky account (check username👆) Bugs, feature requests, feedback: support@bsky.app