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Bluesky Follows
Dare to be Rare
Follows by @daretoberare.org
Catherine Stratton, MPH
Registered:14 Nov 2024 00:10
Follow date:10 Mar 2025 17:15
Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafoundation #KnowledgeTranslation #KnowledgeSynthesis #RareDisease #PainScience #Disability
Alltrna
Registered:13 Nov 2024 15:30
Follow date:10 Mar 2025 17:15
Last post:24 Feb 2026
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
Registered:25 Nov 2024 14:55
Follow date:3 Mar 2025 16:40
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
Registered:9 Dec 2024 19:51
Follow date:27 Feb 2025 18:30
Last post:9 hours ago
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
Registered:19 Dec 2024 12:36
Follow date:26 Feb 2025 13:26
Last post:2 Mar 2026
Transforming Clinical Trials for Ultra-Rare Diseases.
🔗 https://realised-ihi.eu/
Medics for Rare Disease
Registered:23 Jan 2025 10:28
Follow date:24 Feb 2025 21:23
Our vision is a world in which there is equitable healthcare for everyone
PacBio
Registered:24 Jul 2023 16:37
Follow date:24 Feb 2025 21:22
Last post:4 hours ago
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
Registered:20 Jan 2025 10:21
Follow date:24 Feb 2025 21:22
Last post:6 days ago
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
Registered:14 Jan 2025 14:56
Follow date:24 Feb 2025 21:22
Last post:3 days ago
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
Registered:12 Nov 2024 22:46
Follow date:24 Feb 2025 21:21
https://TheRDDR.org
RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.
Rare Diseases International (RDI)
Registered:22 Nov 2024 07:51
Follow date:24 Feb 2025 21:21
Last post:1 day ago
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
Cambridge Rare Disease Network
Registered:1 Jan 2025 09:21
Follow date:24 Feb 2025 21:21
Last post:19 Feb 2026
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
Registered:14 Oct 2024 20:27
Follow date:24 Feb 2025 21:21
Last post:1 day ago
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
Registered:27 Jan 2025 21:09
Follow date:24 Feb 2025 21:20
Last post:17 Dec 2025
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)
Registered:16 Jan 2025 21:39
Follow date:24 Feb 2025 21:20
Last post:28 Feb 2026
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
Registered:11 Nov 2024 06:26
Follow date:24 Feb 2025 14:57
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
Registered:12 Apr 2023 04:53
Follow date:21 Feb 2025 18:00
Last post:24 hours ago
Last like received:35 seconds ago
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