CRID - Unique Patient ID for rare disease clinical research
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.
@wild1979.bsky.social
Passionate and outspoken Advocate for families affected by ALS. Speaker, writer, mother, caregiver, wife and lover of good conversations, wild adventures, and authentic moments.
@cmdclear.bsky.social
I am a person with an intellectual disability called Kabuki Syndrome. Writer. Blogger www.crystalmwilliams.com
@renegaderesearch.bsky.social
Renegade Research (RR) is a non-profit 501c3 decentralized organization pioneering patient and caregiver led research focused on ME/CFS and LongCovid... Website: https://renegade-research.org 💙 Project: @remissionbiome.bsky.social
@weatherprojectnihr.bsky.social
The WEATHER Project team are developing a new early weather warning system (EWS) for communities in the Durban area of South Africa where extreme weather events (EWEs) is leading to flash flooding.
@engagedroadmap.bsky.social
Co-Creating Ireland's Public Involvement in Open Research Roadmap ENGAGED is building a national roadmap to shape public involvement in open research in Ireland. We believe that research can and does play an important role in tackling societal challenges.
@myhealthmyhands.bsky.social
Person-centred health management through access to their health data using EUDI Wallet services Funded by the EU. Views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the EU or the granting authority.
@larsmuenter.bsky.social
Co-founder Nordic Wellbeing Academy @wellbeingacademy.bsky.social Development Director European Health Futures Forum. Sustainable cities, people, education & health. Radical Optimist. Comms, policies & progress, cross-border projects and research
@wellbeingacademy.bsky.social
Nordic explorers - an NGO connecting people, organisations, and ideas globally to promote wellbeing based on Nordic experiences, ideas, and innovations.
@ehff.bsky.social
NGO registered charity in Ireland. A network for transformative change in health care - based on a holistic view of human, plant, animal, and planetary health and wellbeing; with social equity at the centre.
@philandra.bsky.social
@neckellab.bsky.social
Research group studying enteric neuroscience, neurogastroenterology, and anatomy
@marymorlino.bsky.social
The world has achieved a level of craziness beyond my understanding. Clinging to a sliver of hope.
@precisionmedicine.bsky.social
Associate Director of Bioinformatics and Software at Illumina. Unleashing the power of the genome through SW and AI. #PrecisionMedicine #Cancer #MECFS #RareDisease
@timsparwasser.bsky.social
https://www.unimedizin-mainz.de/medizinische-mikrobiologie-und-hygiene/startseite/uebersicht.html #DGfI #DGHM #IUIS / 🦖☄️🦠🔬🧫🐁🧍/ #immunometabolism / #host-pathogen interaction / 🇪🇺 / own views only
@medicsforrare.bsky.social
Our vision is a world in which there is equitable healthcare for everyone
@prbb.org
We are the largest biomedical science hub in the south of Europe, by the beach in Barcelona. Biomedical research with a view | Recerca biomèdica amb vistes @researchmar.bsky.social @crg.eu @upf.edu @embl.org @isglobal.org @ibe-barcelona.bsky.social FPM
@rosca26.bsky.social
Postdoc'ing @WashU 👩🏻🔬 AHA fellow 🫀 Rare musculoskeletal diseases & ion channels🔬 Bookworm 📚 avocaddicted 🥑 4strings lover 🎻 📍🇺🇸 🇫🇷 🇨🇱 | 🇮🇹
@lorestry.bsky.social
Early development stories - inclusive of preemies & babies w/ special healthcare needs. NICU RN founder. Observations create sharable reports. 🌳🦌🌳 Free on the App Store - https://apps.apple.com/us/app/lorestry-baby-life-milestones/id1611631542
@kabukisyndrome.bsky.social
We drive research to treatments for this rare disease through collaboration, education, and fundraising. www.kabukisyndromefoundation.org
@arrefoundation.bsky.social
Supporting research for ASXL-related disorders: Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers Syndromes
@melissa-kinch.bsky.social
PhD candidate UCD | Child, Adolescent & Family Research | Patient Voice & Engaged Research | Rare Disease Research | Methods Enthusiast | All views are my own
@toriawase.bsky.social
From away. Wolverine. Chanoyu. Rare diseases research. Black coffee. Seeking enlightenment thwacking someone upsides the head with a big stick.
@madgabmd.bsky.social
Swiss-American🇨🇭 Peds nurse #SlavaUkraïni 🇺🇦 Stand with Canada 🇨🇦 Shih Tzu mom. FUCK MAGA #VaccinesWork #GunReformNow #ClimateChangeIsReal #AcceptScience #FAFO #PedsSky
@barbararvt.bsky.social
Mother, Grandmother,Social Worker, State Legislator, Nonprofit Exec, Adjunct Instructor, Advocate, cat lady, NJ girl living in Vermont via Ann Arbor, MI
@junioreinsteins.bsky.social
Award-winning Science events for kids. Founded Ireland☘️Scientist & Mum, speaker United Nations 🇺🇳 Hands-on, STEM fun to kids Ireland 🇮🇪 UK 🇬🇧Canada 🇨🇦 Join us as Franchise Owners! Licences for universities and corporations junioreinsteinsscienceclub.com
@activityuplift.bsky.social
Fun activities for Dementia & Alzheimer's Caregivers, Seniors, and Activity Professionals. https://activityuplift.com
@women-r-smarter.bsky.social
Midlife Magic 🪩 Mile High Madness Advocate ♿ #CDKL5 🧬Neuro & #Genetic science stalker. Lover of dogs, beer, pejuta sapa, bodily autonomy, music, mountains, Pilates & witty humans. Podcasting amateur 👇🏼 https://bsky.app/profile/cdkl5incolor.bsky.social
@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
@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
@mitocamb.bsky.social
MitoCAMB brings together a team of clinical researchers focused on mitochondrial and neurodegenerative disease translational research. mitocamb.medschl.cam.ac.uk (Photo: Florian Klimm)
@nerseyrastan.bsky.social
sponsor & super positive leader 🚠 Clusity 🌱 #WomenInTech Ambassador '24-'25 | CTO @TheSynergist.org | Digital Platform Co-Lead IHI-READI | Mentor | Advisor | Board Member 🧪 🩺🖥️ #HealthEquity #MS #HealthIT #WomenInTech 👩🏽🔬 #WomenInSTEM
@geneticssociety.bsky.social
🧬Founded in 1948, the American Society of Human Genetics (ASHG) is the primary professional membership organization for #humangenetics specialists worldwide. www.ashg.org
@uniquecharity.bsky.social
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. http://rarechromo.org
@crg.eu
Hola! We are the CRG, a research institute exploring the frontiers of biology in Barcelona. Som un centre CERCA. www.crg.eu
@rarediseasesint.bsky.social
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
@foxp1foundation.bsky.social
We are a global group of parent volunteers working to empower families and individuals with FOXP1 Syndrome to live full and enriched lives. We are a registered 501C3 🦊 www.foxp1.org
@cgdsociety.bsky.social
Our vision is to enable families and individuals affected by CGD to live life to the full by providing wellbeing and medical support.
@sicklecellchoices.bsky.social
CHOICES provides, before conception, the needed health information to individuals affected by sickle cell disease or carrying the sickle cell trait. Our hope is that CHOICES will assist people to make make informed parenting plan choices.
@kcnq2.bsky.social
⚡ Supporting breakthroughs for KCNQ2 families 🧬 Research | Advocacy | Hope 🎯 Goal: $100K by 12/31 – Every dollar doubled! ❤️ Join us: https://givebutter.com/2024KCNQ2
@avrilkennan.bsky.social
CEO, Health Research Charities Ireland @hrci.bsky.social (views own). PhD in genetics. Ambitious for a better world through collaboration & inclusion. She/Her 🤹♀️ PPI | research impact | health data | evidence-based policy | genomics | rare diseases...
@jfcryan.bsky.social
VP Research & Innovation, University College Cork @ucc.ie @uccresearch.bsky.social |PI @apcmicrobiomeirel.bsky.social |Prof Dept. Anatomy & Neuroscience |MRIA @ria.ie| Stress, Microbiota-Gut-Brain Axis, Brain-Body Interactions, Research Policy
@statsepi.bsky.social
Epidemiologist + Statistician | Clinical Research Facility - University College Cork | UCC School of Public Health | #ClinicalTrials #Epidemiology #Statistics #RStats #WBE #IDSurveillance Views mine -> https://statsepi.substack.com/
@maritahennessy.bsky.social
Researcher | PhD | Ireland #PregnancyLoss #ReproductiveHealth #ReproductiveJustice #WeightStigma #MensHealth #CDoH #COI #PublicHealth #SDoH #ImpSci #KnowledgeTranslation #GraphicMedicine
@eidin.bsky.social
Sí/Í; Senior Lecturer @ RCSI Graduate School of Healthcare Management Gaeilge Líofa #CorcaDhuibhne Abú #RefugeesWelcome https://www.rcsi.com/people/profile/eidinnishe
@shaneir.bsky.social
Genetics/Genomics doc, Nazareth Hospital biker, developing solutions for #RareDisease and Digital Healthcare on a #Psion Series 3a. Want to see peace in Northern Ireland, Israel-Palestine & Planet Earth. https://shanemuk.github.io
@eithnesexton.bsky.social
Lecturer at School of Population Health, RCSI University of Medicine and Health Sciences. Interested in epidemiological modelling, ageing, chronic disease, stroke, dementia and cognitive impairment, quality of life.