Catherine Stratton, MPH @cathsmstratton.bsky.social Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafoundation #KnowledgeTranslation #KnowledgeSynthesis #RareDisease #PainScience #Disability
Alltrna @alltrna.bsky.social Alltrna is the world’s first transfer RNA (tRNA) platform company, and we are unlocking the vast therapeutic potential within #tRNA biology. #StopCodonDisease
Learn more: https://www.alltrna.com/
MyScienceWork @mysciencework.bsky.social Empowering research institutions with custom open-source institutional repositories, CRIS, grant management systems, & much more! | Advocates of #OpenScience and #OpenAccess | Paris 📍
🔗 www.mysciencework.com
Oxford-Harrington Rare Disease Centre @oxfordharrington.bsky.social Partnership of the University of Oxford and Harrington Discovery Institute. Combining expertise in discovery science and therapeutics development to accelerate cures for rare diseases.
Visit us at: www.oxfordharrington.org
RealiseD @realised-ihi.bsky.social Transforming Clinical Trials for Ultra-Rare Diseases.
🔗 https://realised-ihi.eu/
Medics for Rare Disease @medicsforrare.bsky.social Our vision is a world in which there is equitable healthcare for everyone
PacBio @pacbio.bsky.social Our mission is to enable the promise of genomics to better human health by creating the world’s most advanced sequencing technologies.
VASCERN | European Reference Network @vascern.bsky.social Advancing the diagnosis, treatment, and care of patients with rare multisystemic vascular diseases across Europe.
🔬 Evidence-based guidelines | 🌍 Cross-border collaboration | 📚 Education
📌 Visit us: www.vascern.eu
ERDERA @erdera.bsky.social Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe.
🔗 erdera.org
Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
The Rare Disease Data Repository @therddr.bsky.social https://TheRDDR.org
RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.
Rare Diseases International (RDI) @rarediseasesint.bsky.social RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
Cambridge Rare Disease Network @camrare.bsky.social Making rare disease an everyday conversation.
CamRARE is a charity empowering rare disease communities & fostering cross-sector collaboration to improve outcomes for those affected.
#RareDisease
Local | National | Global www.camraredisease.org
Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social RDND Lab at King’s College London led by Cristina Dias. Clinical Geneticist and Rare Disease researcher. Rare Conditions, neurodevelopmental disorders of chromatin regulation and chromatin remodeller-TF interactions.
https://tinyurl.com/rdndkcl
EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
National Organization for Rare Disorders (NORD) @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
Carmen Camacho , MA, LSW @camachoc2000.bsky.social Mental health Clinician , Rare Disease Advocate , patient educator. Received a double lung transplant May 27 due to the pulmonary fibrosis of Hermansky Pudlak syndrome.
Bluesky @bsky.app official Bluesky account (check username👆)
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