hEDStogether
@hedstogether
Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)
ID: 1194886200039018496
http://www.hEDStogether.com 14-11-2019 07:54:35
1,1K Tweet
3,3K Followers
163 Following
Dr Clare Forder
@clforder21
Academic Subject Leader @BrightonBschool @uniofbrighton Interested in pre-professional identity development, wellbeing and sustainability. Prof Doc.
tanea_zelandica
@zelandica
𝕏 𝕏 ___SouthEastSouth NZ___🇦🇷 🇪🇸 🏴 🇳🇿don’t believe everything you think 💭autistic from way back
Kristen H McLeod 🤷🏻♀️
@kristenhmcleod
Writes on parenting, culture + growing up in a cult where Satan's clutches were not - unfortunately - designer handbags.
Karen Lubell
@karenlubell
ME/CFS is a connective tissue weakening caused/worsened by a virus. This can lead to Craniocervical Instability, Venous Compressions, CSF leaks and more.
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).
The Quirky Brain Coach PhD, PGCap, PPDip, L5 Coach
@your_nd_coach
#PositivePsychology coach: zest, self-regulation and motivation. ND coaching researcher. She/her. #ActuallyAutistic ADHDer 🏳🌈 quirkybraincoach.bsky.social
✨🎶Kristennnn🍉✨
@singingsox
🎼soprano, voice teacher, anti-cap, has a cute cat. shiny maker (😷 chains & earrings). slowly forming a global coalition of musicians 4 clean air. Linktree ⬇️
Katrin
@ilmpiranha
Renuka Dhinakaran
@renudhinakaran
International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid Focusing on marriage, parenting & chronic illness
☀️Boardwalk Empress☀️
@cocojanele
💜 MSW 💜 Health Policy 💜 Champagne 💜 Coffee 💜 Naps 💜
Birdon_thewire
@birdon_thewire
ᴮᴱᴸᶠᴬˢᵀᴮᴼᴿᴺ🍀 ᴍᴜᴍ 💁♀️ ᴇxʟᴀᴡʏᴇʀ ⚖️ 𝘕𝘏𝘚🌈 ᴘꜱʏᴄʜᴏᴛʜᴇʀᴀᴘɪsᴛ Ψ ᴅoᴄᴛoʀᴀᴛᴇ ᴘꜱʏᴄʜᴏʟᴏGʏ Ψ 📚🧑🏼🎓
Coventry University Research and Innovation
@covuniresearch
Challenge-led research and innovation from Coventry University. linkedin.com/company/covent…
Ash Taylor
@thisoldcamper
Professor Lara Bloom
@larabloom
President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️🌈Gay•She/Her• Views my own
Zach Donohue
@zacharydonohue
Industrial Design Director at Conficio Product Design
Melissa Mulgrew
@mclmulgrew
Ashley Hogg
@ashley_j30
Jeannie Di Bon
@jdibon
Hypermobility & EDS | Movement Therapist | Author of "Hypermobility Without Tears" | jeanniedibon.com | Founder of The Zebra Club
Thia
@thiamg_
what other people think of you is none of your business.
EDS Awareness
@edsawareness1
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
Ehlers-Danlos Support UK
@ehlersdanlosuk
EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.
Kenn
@kennedy_skyec
OhTWIST.bsky.social now too
@h2ohtwist
Oh, That's Why I'm So Tired! Ehlers-Danlos Syndrome survivor & writer. She/her. Co-author #EDSToolkit for doctors. EDS / HSD isn't rare, just rarely diagnosed.
Mitzi Hollander
@mitzi_ad
lowercath
@lowercath
Dawn Collums Ed.D.
@collums_dawn
Director of Student Services Western Heights Public Schools, Dr. Education in Administration and Leadership. Passionate about #equity #UDL #accessforall
Amanda
@ma_n_d
🪴🌸
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.
Carriemello
@kiss_my_xp
Healer, Mother, Music Lover. Gamer Chick, Modelling Pics. Photography Whiz, In the Biz of Wigs. Corset Wearer, Positivity Bearer. Engaged to SP 💝
David Matthews
@david_m_writing
No, I don't have a band. Retired architect and habitually grumpy aspiring author. Advocate for a daughter with #EDS #MCAS and #POTS
BendyBrain: Dr Jessica Eccles
@bendybrain
hypermobility + related conditions brain-body neuro research @bsmsmedschool | Chair RCPSYCH NDPSIG | Linktr.ee/bendybrain | @bendybrain.bsky.social
Carolyn
@carolynsylves14
Petra Carroll
@petraca54578683
Retired NHS worker
Joanna No Banana
@joannanobanana
Joanna (she/her) 29 Queen of Allergies 👑 MCAS. POTS. EDS. CCI 💛 Autistic. ADHD. OCD. PMDD. Striving to live my best life 💕 #ForTinu
Sabeeha Malek, PhD
@sabeehamalek
Postdoctoral Researcher @Warwick_CMCB in Koester lab & @wingyingchow lab🔬📚🧬 Studying cell biomechanics & collagen/ECM changes in EDS/HSD #biophysics
Cortney Gensemer, PhD
@cortdoesscience
Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education
Norris Lab
@norrislab
Research Lab at the Medical University of South Carolina #HeartValveDisease #MitralValveProlapse #EhlersDanlosSyndrome #Fibrosis
collagen machine broke
@chronicallybeee
dyke | she/they | #FreePalestine
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@jefflubell_c19
I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist.
CielleLouise
@found_genx
Independent Voter before it was cool 🤍#Independence 🤍 & #Unity to save the world 🌎 🕊️ #ChristConsciousness
Tess Falor, Ph.D. | Renegade Research
@tessfalor
Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome
Candace D.
@diaryofasickgrl
Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Disabled Doctor
@disableddoctor
PhD. Clinician-Scientist. Gamer. Chicken-herder. CCI ADHD EDS TBI TN 🏳️🌈
Stop Medical Kidnapping
@medical_kidnap
Misdiagnoses of child abuse of sick children by child advocacy pediatricians (like K.Nolan from McMaster in our case) lead to wrongful apprehensions by FACS.
Jamie Jones
@77jamiebeth
Mama of Reese and Bradley and currently fighting breast cancer. Ehlers Danlos, Chiari, Hashimotos, Thoracic Outlet, Tethered Chord and Scoliosis warrior!
Miss Kyra
@misskyra15
max 🦇
@foxcakepop
literally just a girl 🎀
HayBaylesHey
@haybayleshey
Just a girl who loves history, books, and plants.
KatsonRose
@katsonrose
whatsurdamage
@livefreeusa76
Darlene Wimbrow
@wimbrowdarlene
Accolade Radiology
@2ndconsult
Radiology 2nd Opinion
Sarah Stainko MSN, FNP-C
@sarahstainkonp
Nurse Practitioner🩺 • Destination Services, Innovative Endoscopy & Motility @IUGastro • @IU_Health • 2025 National Program Planning Committee Chair @SGNAOnline
Marcy’s muse
@cmwstar
Social Worker. Advocate. I believe in equality. 🏳️🌈 ☮️ 🧡
girlypop
@b1tchstein
Shelley E
@shelleye330490
Holli McDowell
@holli613481
Wife to an amazing man and mom to two awesome kids! Adoption Recruiter for Wendy's Wonderful Kids with Beech Acres Parenting Center.
Daisy
@hisdivinemess2
Just a daisy growing in the sunshine of truth.
Spoons of Salt
@spoonsofsalt
Atlanta area Chronic/Invisible Illness Support and Awareness. We do Virtual and In-Person Meetings. #Supportforthetachytimes #Pots #chronicillness #supportgroup
Adil Khan
@_khanadi
Tracey M Everatt
@everatt_m65523
Holly Bailey
@hollybailey_687
Mz Chedda🧀
@harvestcheddar_
“Well-behaved women seldom make history" ✡️ 🪬 💨💪🏼☕️🐱🏳️🌈•Future Attorney &Author •Crime Junkie• Gym🐀•Sober 7yrs• #autoimmunewarrior #IVIG
Kathy
@kathymcwhitten
The Middle Aged Zebra
@middlezebra
Pau Puig
@puigpauadvocate
#EDS #PoTS #Dysautonomia Secretary of @AEPOD_es Volunteer at @ANSEDH Views are on my own
EDSpatient
@edspatient
Sharing my struggle with Ehlers Danlos Syndrome
freedom for all
@janicebayless
shadow of a cougar; RN, BSN when nursing & medicine worked together; Ehlers-Danlos
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]
Karin von Smitten
@smitten_von