Dysautonomia Intl.
@dysautonomia
Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
ID: 41038352
http://www.dysautonomiainternational.org 19-05-2009 02:49:37
10,10K Tweet
25,25K Followers
354 Following
Milken Institute
@milkeninstitute
Catalyzing Solutions. Building Meaningful Lives. #MIGlobal
Nick H
@breakfastnick
Meighan Stone | @meighanstone.bsky.social
@meighanstone
Human rights at home & abroad ♿ Executive Director @LCCampaign. Past: President @MalalaFund, Senior Fellow @CFR_org, Fellow @Kennedy_School, @WFP & @ONECampaign
Judy Stone
@drjudystone
Author: Resilience: One Family’s Story of Hope bit.ly/ResilienceStone & Conducting Clinical Research bit.ly/CCRText ID doc, freelance @[email protected]
Ziyad Al-Aly, MD
@zalaly
Physician-Scientist | TIME100 Health time.com/6966812/ziyad-… Profile: outlook.wustl.edu/real-world-ref…
Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺
@dbkell
I tweet in a personal capacity. ENTJ. CBE. Against brexit/Govt lies. #FBPE osf.io/pnxcs/ dbkgroup.org/longcovid/. Nothing I say is medical advice
Ryan Prior
@r_prior
@Kennedy_School MPA class of 2025. Author of “The Long Haul” book on #LongCovid (@mitpress) Words: @psychtoday @CNN @tcfdotorg @thenation @statnews @guardian
The Ehlers-Danlos Society
@theedsociety
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
LymeDisease.org
@lymenews
The #Lyme disease community's leading source for news, insight and advocacy. Publisher of The Lyme Times, creator of MyLymeData. A 501(c)(3) organization.
Solve ME/CFS Initiative
@plzsolvecfs
Making ME/CFS, Long Covid & associated conditions widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @ ow.ly/jQji50Srbuv
Bhupesh K Prusty
@bhupeshprusty
A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
Lauren Jonik
@laurenjonik
Storyteller with a passion for tech, social justice & animal welfare. Master's in Media Mgmt from @TheNewSchool. Co-founder/editor: @refreshweekly #binders
Renuka Dhinakaran
@renudhinakaran
International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid Focusing on marriage, parenting & chronic illness
AANEM
@aanemorg
American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM): nonprofit association dedicated to neuromuscular and EDX medicine.
Hannah Davis
@ahandvanish
Research, algorithmic music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled. DMs rarely checked
Georgia Linders
@georgialinders
#LongCOVID 2020, (former Hairstylist & Graphic Artist), now I make Dolls and Sculptures. Midwest, USA. (she/her) #MECFS
Resia Pretorius
@resiapretorius
Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Alexander Tin
@alexander_tin
Reporting for @CBSNews in D.C. on federal public health. Raised in sunny Nevada. Email is [email protected], call/text/signal at 202-381-7107
Jeanne Marrazzo
@drjeannem
STI/HIV/women's health physician-researcher-mentor
Michael VanElzakker
@mbvanelzakker
Neuroscience researcher @MGHMartinos / @HarvardMed and @PolyBioRF, researching #MEcfs, #LongCOVID, & #PTSD. (all opinions are my own)
Rivka
@rivkatweets
Activist/Organizer: ChronicIllness, disability, ME/CFS, Lyme, LongCovid, women | Writer: WashPost, MarieClaire, NPR, Ms, Newsweek | Playwright: Many productions
Donald Thomas, MD
@lupuscyclopedia
bit.ly/LupusEncyclope… Advocate for #lupus, #Sjogrens, #MCTD, #UCTD patients, sharing empowering, educational information. Tweets are my own 🏳️🌈💜
Heather
@idepiheather
Drug Repurposing Lover, Public Health Guru Analyst in global health & infectious diseases. Epi & anthropology. views are my own. personal acct
Julia MV
@julialmv
Senior Program Director @ScrippsRTI & #LongCovid patient-researcher @patientled Let's improve health equity Accessibility is my love language Views are mine
Mark Pimentel MD
@markpimentelmd
Executive Director, @MASTprogram. A program finding solutions to diseases of the human #microbiome such as #SIBO, #IBS, #Metabolicdisorders @CedarsSinaimed
Janet Dafoe
@janetdafoe
Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Putrino Lab
@putrinolab
We make people (and technology) better at Mount Sinai. Opinions are my own.
Rachel Cohrs Zhang
@rachelcohrs
Reporting on the intersection of health care, money & politics @business. ✉️: [email protected] Signal: rachelcohrszhang.87
Alessia Alunno
@alessia_alunno
MD PhD | Rheumatologist | 2018-2019 Chair of @EMEUNET | 2018-2019 Chair of @SIRyoung_IT | Social Media Editor @eular_ARD |
Alissa Zingman MD MPH - ZebraMD
@doczing
PRISM Spine and Joint, prismsj.com, Research EDSRF.org, Hypermobility Care, Wife/Mom/CEO/Dancer. Tweets are not medical advice.
Sarah Schafer MD MPH
@sarahschafermd
See Sjogren's Advocate, @sarahschafermd.bsky.social. I combat Sjogren's myths to improve diagnosis and care for this serious, systemic disease.
Billy Hanlon
@bhanlon15
ME/CFS | Long COVID | IACC
Cortney Gensemer, PhD
@cortdoesscience
Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education
S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic
@dysclinic
Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
CURE ID
@id_cure
Treatment Registry for Repurposed Drugs. Share your treatment experiences-cure.ncats.io. This is an unofficial friends of CURE ID account. Views our own
WesElyMD
@weselymd
Husband & Dad. ICU Doc. Vanderbilt. @CIBScenter studies Covid & Long Covid, ICU Survivorship, PICS, Dementia, Delirium. Tweets my own. Still learning.
Long Covid SOS @longcovidsos.bsky.social
@longcovidsos
UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation longcovidsos.org longcovidsos.bsky.social
charlos
@loscharlos
😎🌁🎷 #LongCovid March 2020 😵💫
Blackdisabledlivesmatter
@blackdisabledl2
We are an organization fight for black disabled lives at all time
Jennifer Ostan
@jenniferostan
Reluctant tweeter. Military caregiver. Dole Caregiver Fellow 2020 Sharing my story so others won't feel so alone.
Christine Maughan
@christinevm3
Long Covid Advocate. Utah COVID Long Haulers.
Patient-Led Research Collaborative
@patientled
Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
Kewin Siah
@kewinsiah
Gastroenterologist, love_DGBI | Sec-Gen @ANMA_i | President, IBS Support Group Singapore I Cochair, Social Media @RomeGastroPsy I Associate Editor @JNMjournal
Shaney Wright
@shaneywright
@WestHam Fan ⚒ | Accidental Centrist I Pro-Pragmatism and Real World Outcomes I Anti-Ideologues.
Melissa Mazur
@phillyphile215
Just a Philly girl, livin' in a lonely world…and a Luddite learning to Twitter. #LongCovid since March 2020 || Lawyer on Pause
LongCovidPodcast
@longcovidpod
Podcast hosted by Jackie Baxter, bringing together lived experience, medical experts, researchers & solidarity on this lonely #LongCovid journey #FBLC
Dr. Jennifer Curtin
@jencurtinmd
Physician. Entrepreneur. Nerd. 🍊YCW22. RTHM co-founder. Recovered ME/CFS. Treated infection assoc illness b4 Covid. Tweets/DMs are my own & not medical advice.
Karyn Bishof
@k_bishof
Founder & Pres. @C19LH_Advocacy (views/posts are my own), #LongCOVID, Fmr. Firefighter/Paramedic & Educator, B.S. (ex sci & health promotion), #indigenous, #mom
RTHM
@rthm_health
RTHM connects you with a digital care team specializing in Long COVID and ME/CFS that provides access to a range of therapies based on the latest research.
LongCovidPharmD
@organichemusic
Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. PharmD.substack.com ko-fi.com/LCpharmD
Michael Peluso, MD
@michaelpelusomd
Infectious disease doctor @UCSF. #LongCOVID researcher. #HIV clinician and #HIVcure researcher.
Mushtaq Bilal, PhD
@mushtaqbilalphd
I simplify the process of academic writing | Helped 6,000+ become efficient academic writers with AI | ResearchKick.com 2K users, ChatAcademia.com 200 users
Dr. Bexi
@bexiphd
Sjogren's (SHOW-grins) skin care & more. Revitalise your skin from the outside in and within w/Bexi's, everything your skin needs, and nothing else.
Jennifer Ramey
@jenloveslon
Electrophysiology/Cardiology nurse. surviving Long Covid, autoimmune autonomic ganglionopathy.
Post-Viral Trials News
@postviraltrials
No longer posting updates here – find me at postviraltrials.bsky.social
Lumia Health
@wearlumia
Track Blood Flow to Your Head. The new In-Ear #wearabledevice for #POTS, #Syncope, #Dysautonomia, #OrthostaticHypotension and more. Formerly STAT Health.
Dr. Jim Harris MD
@jimharrismd
Medical Director @ The EDS Clinic: EDS.clinic #MCAS #POTS #EDS
Long Covid Moonshot
@lcmoonshot
18 million Americans suffering with Long Covid. ZERO treatments. We need a moonshot for Long Covid research funding!
LongCOVIDCampaign
@lccampaign
Nonpartisan & patient-focused, Long COVID Campaign (LCC) works for accelerated research, affordable treatment & expanded support in the U.S. & globally.
University of Utah Neurology
@uofuneurology
The Department of Neurology at the University of Utah is committed to the conquest of neurological disease through patient care, research, and education.
It'sME(Jaime)
@exceedhergrasp1
Scientific Director, #MEAction Stanford Med TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own [email protected] (really not on X anymore!)
Fibromyalgia National Health Organization
@teamfibro
We educate, advocate, research & empower. No one fights fibromyalgia alone! Taking action!💜 501(c)(3) for impact organization #Fibromyalgia
Ian Goodfellow
@goodfellow_ian
DeepMind Research Scientist. Opinions my own. Inventor of GANs. Lead author of deeplearningbook.org Founding chairman of @pubhealthaction
Erin M
@erinapn1
Audaciously committed to hope. Mum of severe Long Covid Kiddo. From Journo to law. bsky.app/profile/erinmg…
Bea is Chronically Persisting✨
@be_kinderr
Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Mike Z
@mikez____
Trying to be better & do good. “Power concedes nothing without a demand. It never did & it never will.”
MAST Research Program
@mastprogram
Medically Associated Science and Technology Program @CedarsSinai A multidisciplinary team studying the human #microbiome and finding new ways to help patients
Vijay Iyer PhD
@vijayiyer312
Patient advocating science for #mecfs & #dysautonomia (incl via #longcovid & #postvac).👷🏾♂️Support #neuroscience users & use cases of @MATLAB. Tweets my own.