PCD Support UK
We talk about Primary Ciliary Dyskinesia (PCD) as widely as possible and champion research to improve its diagnosis, management and treatment.
@bsky.app
official Bluesky account (check username👆) Bugs, feature requests, feedback: support@bsky.app
@eastgenomics.bsky.social
High quality genomic medicine for cancer and rare condition patients in the East Midlands and East of England. We are the East Genomic Laboratory Hub (GLH) + the East Genomic Medicine Service Alliance (GMSA) http://linktr.ee/east_genomics
@curaregens.bsky.social
We are a multidisciplinary research team investigating the experiences of individuals with chromosomal conditions/copy number variants (CNVs) www.linktr.ee/CNVResearch
@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
@thezebraalliance.bsky.social
The Zebra Alliance represents a beacon of hope and solidarity for navigating the challenging waters of Ehlers Danlos Syndrome, Rare Diseases, and Chronic Illness 🦓💙 Community • Education • Resources • Advocacy & Allies https://linktr.ee/thezebraalliance
@raremd.bsky.social
RareMDx™️, is a diagnostic algorithm with 4043 distinct Rare Diseases and 7693 symptoms that have a relevance weight to each RD. Selected symptoms create an instant differential diagnosis of ≤ 10 RD ranked by probability. RareLook™ is its layman's version.
@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.
@rd-rn.bsky.social
An online hub supporting patient driven research ideas to be realised & flourish. Open to all. Join the #RareDisease #Research revolution at www.rd-rn.org * connections * resources *mentoring NIHR funded, co-created by CamRARE, PLRH & patient experts
@rarediseasesint.bsky.social
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
@therddr.bsky.social
https://TheRDDR.org RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.
@geneticscam.bsky.social
The Department of Genetics, @uniofcam.bsky.social : One of the few genetics departments in the UK. https://linktr.ee/camgenetics
@healthfoundation.bsky.social
We are an independent charitable organisation working to build a healthier UK. www.health.org.uk
@shscft.bsky.social
We provide mental health, learning disability and specialist services in Sheffield. If you need help in a crisis visit http://shsc.nhs.uk/urgent-help
@ysteachingnhs.bsky.social
Acute hospitals and specialist healthcare services for York, North Yorkshire, North East Yorkshire, and Ryedale.
@gloshealthnhs.bsky.social
We provide community-based physical health, mental health and learning disability services. Rated 'Good' by CQC in August 2022.
@whithealth.bsky.social
Helping local people live longer, healthier lives across Islington, Haringey, Camden, Barnet and beyond.
@lgtnhs.bsky.social
🏥 University Hospital Lewisham | 🏥 Queen Elizabeth Hospital, Woolwich | 🚑 Lewisham Community services. www.lewishamandgreenwich.nhs.uk
@worcsacutenhs.bsky.social
🏥 We run the Alexandra Hospital in Redditch, Kidderminster Hospital, and Worcestershire Royal Hospital, caring for more than 250,000 different patients a year.
@mse.nhs.uk
We are #MSETeam, one team working together for excellent patient care mse.nhs.uk Basildon, Broomfield and Southend hospitals. Our Trust values: excellent🌟 compassionate 🧑🤝🧑 respectful mse.nhs.uk/social-media-house-rules
@uhpnhs.bsky.social
Please be aware that this account is not currently monitored. Please read our social media acceptable use guidance here: https://www.plymouthhospitals.nhs.uk/social-media-acceptable-use-guidance
@ekhuft.bsky.social
The official Bluesky page for East Kent Hospitals University NHS Foundation Trust. This account is actively monitored from 9am to 5pm Monday to Friday. See our website at: www.ekhuft.nhs.uk
@cuh.nhs.uk
We run the world-leading hospitals Addenbrooke’s and The Rosie. We’re unable to offer medical advice on our Bluesky channel.
@medicsforrare.bsky.social
Our vision is a world in which there is equitable healthcare for everyone