Project Zebra @projectzebraeds
Project Zebra is a web-based campaign to provide doctors and general public with high-quality information to better understand Ehlers-Danlos Syndrome (EDS) projectzebra.wixsite.com/project-zebra Joined February 2016-
Tweets398
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Followers424
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Following33
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Likes21
Retweeted Sarah Wells (@mystripylife): Hidden disabilities -pain beneath the surface. From BBC News... fb.me/7VFJweluy
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Project Zebra retweeted
Hidden disabilities -pain beneath the surface. From BBC News #ehlersdanlos #diabetes #MS and #dyslexia. fb.me/BZPYcNfw
Retweeted EDS UK (@ehlersdanlosuk): More and more patients are having to crowdfund their own wheelchairs... fb.me/17wvOlbSD
Project Zebra retweeted
More and more patients are having to crowdfund their own wheelchairs independent.co.uk/news/health/nh… @Independent #ehlersdanlos #disability
Retweeted EhlersDanlos Society (@TheEDSociety): The More I Learn About My hEDS, the More I Realize I Don't... fb.me/888kClKCy
Project Zebra retweeted
The More I Learn About My hEDS, the More I Realize I Don't Understand ow.ly/a5N230davan
Retweeted EDS UK (@ehlersdanlosuk): Many people with #EhlersDanlosSyndrome find that they have a hard time... fb.me/vMsRtXjS
Project Zebra retweeted
Many people with #EhlersDanlosSyndrome find that they have a hard time getting a good night’s sleep! buff.ly/2ugGnIw
Retweeted EDSWellness (@EDSWellnessSol): I added a video to a @YouTube playlist youtu.be/DGeoLgBh_eI?a Yoga for... fb.me/1sMlSQL2V
Project Zebra retweeted
I added a video to a @YouTube playlist youtu.be/DGeoLgBh_eI?a Yoga for Hypermobility - Ehlers Danlos Syndrome (EDS)
When I Asked 25 Kids With Ehlers-Danlos Syndrome What Their Lives Are Like fb.me/6gxwsMJ1T
Happy day 5 of #edsawarenessmonth! What #EDSfacts have you learned so far this month?
Retweeted Emma-Grace (@EmmaRutledge12): May is #edsawarenessmonth !! It's extremely rare & I struggle with the... fb.me/7FNtGy84t
Project Zebra retweeted
May is #edsawarenessmonth !! It's extremely rare & I struggle with the complications of EDS everyday. !!Not all diseases are visible!!
Retweeted Hannah Ensor (@stickmancrips): Classical Ehlers-Danlos syndrome is rare connective tissue disorder... fb.me/5xlJC0Ssx
Project Zebra retweeted
Classical Ehlers-Danlos syndrome is rare connective tissue disorder which can have a huge impact on daily life. #EDSawarenessmonth
Retweeted EhlersDanlos Society (@TheEDSociety): What are the rarer types of Ehlers-Danlos syndromes? Check out... fb.me/8ZgZRgF8k
Retweeted EDS UK (@ehlersdanlosuk): ‘I’M JUST POPPING OUT FOR A WHILE!’ Article by Jason Parry, Highly... fb.me/80zSZrO32
Project Zebra retweeted
‘I’M JUST POPPING OUT FOR A WHILE!’ Article by Jason Parry, Highly Specialist #Physiotherapist facebook.com/EhlersDanlosUK… #EDSawarenessmonth
Ehlers-Danlos Support... @ehlersdanlosuk
18K Followers 10K Following 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.
The Ehlers-Danlos Soc... @TheEDSociety
24K Followers 5K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Isobel Knight @IsobelKnight2
8K Followers 12K Following Internationally published author on hypermobile Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Narrative Medicine & Bowen Technique.
BendyBrain: Dr Jessic... @BendyBrain
8K Followers 2K Following hypermobility + related conditions brain-body neuro research @bsmsmedschool | Chair RCPSYCH NDPSIG | https://t.co/HayQnrkpZk | @bendybrain.bsky.social
EDS Awareness @EDSawareness1
10K Followers 3K Following An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
Steel Zebras 🦓 ♿... @Zebrafishspoony
4K Followers 5K Following We are real life Zebras! We have Ehlers-Danlos Syndrome hypermobile type, with crossover, plus other delightful stuff. All opinions are our own.
LT. Larry B @RunTheRace78
1K Followers 2K Following BAC/John 3:3 ✝ Hubby/Dad/CooPa; Retired Mil🚁AV8R; 🇺🇸J6DC; O|||||||O 🦆; Voice for falsely accused parents ➡️ #MedicalKidnapping #exposeCPS; NC @yatpOfficial
PollenB @PollenB120946
65 Followers 338 Following
Desert Zebra @desert_zebra
33 Followers 99 Following Desert Zebra 🏜 🦓 trying to stay out of the sun and watching Kraken hockey 🏒 🦑
Bᴀᴄᴀʙɪ́✨ �... @bacabi
2K Followers 443 Following Cantante & saltitante🎤💃 O Universo me contou que a alegria está nos pequenos gigantes momentos da vida.
Retta Vialpando @rettaLV
144 Followers 1K Following Disabled former journalist trying to heal a broken body. Trying to learn, share my experiences with a broken health care system. #pwME #hEDS #longCovid
Joseph Falzone MD @JosephFalzoneMD
1K Followers 3K Following A physician with interests in neuroscience, psychiatry, chronic pain, and many others
51Onedaysoon8 @51Onedaysoon8
212 Followers 1K Following
NewFrame @NewFrameThePain
897 Followers 3K Following NewFrame is a digital health platform that supports physical therapist's care for patients with chronic pain 🔬 🧘♀️💤🥑🏃♀️🩺
zebramom @zebramom7
78 Followers 373 Following Single mom of 2 beautiful girls. On a mission for a #servicedog and helping my kiddos navigate #EDS #POTS #CCI #MCAS and college. #Chronicillness sucks!
Center for Complex Ne... @complexneuro
217 Followers 71 Following We provide expert diagnosis and treatment of selected diseases, ALS, CIDP, EDS, GBS, Neuropathy, Myositis, MD, Myasthenia Gravis, POTS & other dysautonomias.
B @ForeverBritton
55 Followers 521 Following
L @AgnosticEmpath
779 Followers 3K Following #EDS #CPP,tired the top ism remains #Ableism-w/Allies who pick protests like social events w/free gold stars,after spreading a bit of awareness(&no caregiving).
Stress Reader @nilla_snowflake
144 Followers 2K Following middle-aged mom, RR wife, life-long book lover and reviewer, video game player, picture taker - Britney Spears follows me, so that's pretty cool 😆
Kimberly & Kane @LEAD4changes
506 Followers 3K Following Hiccups; One; Patience; Emotions; We write connecting the dots about HOPE; in our communities! ConnectInspireAct! ItTakesACommunity! HOPE;United!
Dawn DeGroot Parrish @bpsgrl89
772 Followers 4K Following Passionate about my faith, my family, my credit unions; looking for opportunities to make an impact every day.
EDS_unplugged #chroni... @EDS_unplugged
609 Followers 500 Following #EDSunplugged #vloggers #authors raising awareness for #EDS #EhlersDanlosSyndrome #chronicpain #chronicfatigue #invisibledisability @Marcia_Brock @ConsciousCass
Kristy and ♡Aurora�... @Kristy68800644
6 Followers 247 Following 🖤Peanut Butter, Books & my doglette🖤 Red haired 👩🏻🦽user, in search of fun spoonie/zebra communities & individuals #eds #svt #mcas #mytonia #pots etc..😉
Chrissy🏴�... @chr1ssyb86
519 Followers 3K Following 39yr old Yorkshire lass with Scottish roots! Mum of 2👩👧👦 #EhlersDanlosSyndrome warrior💪 #hEDS🦓🖤Nothing wrong with me.. this is how I'm supposed to be!💚
John 14:27 Jesus is L... @no_canceled
789 Followers 1K Following (chose @name,window of grace, any moment can shut) HIS! Lord Jesus Please Save Me. God loves you. Ask Him now He will help you.
nightinggal86 @nightinggal86
46 Followers 138 Following -my name is jessica,married💜,conquering life with a positive attitude☺,dealing with rare chronic illnesses but staying strong 💪 I love owls🦉
LJStewart 🦓 @LornaJStewart
2K Followers 5K Following I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel - Maya Angelou
Nic 🪐 @nicjam55
206 Followers 3K Following Living with Ehlers Danlos Syndrome, Acute Zonal Occult Outer Retinopathy & chronic autoimmune disease.
K8_Zet 🇵🇱 @ZemKasia
36 Followers 248 Following
Overstretched Mum @SoOverstretched
199 Followers 497 Following Working living mumming the best way I know how with 0 energy. Doodles & giggles. She/her #spoonie #fibromyalgia #fibro #eds #ehlersdanlos #chronicfatigue
Natasha @aussietash35
15 Followers 255 Following
nraffz @nraffz
135 Followers 3K Following
Marian Parker-Reed @mparkerreed
273 Followers 1K Following Lady of a certain age interested in interesting people, the arts and all things beautiful especially 💎
WeAreDiamonds @wearediamnds
983 Followers 1K Following A creative/spiritual seeker of truth. hEDS/POTS/MCAS/PTSD "Unofficial spy in the House of Crazy"-Bob Miller I write as it comes.
Crystal Church @ChurchCrystal
697 Followers 3K Following hEDS🦓https://t.co/1dg9Jr6NaW thanks for u & blessings seen and known,fam.BLM.solid marley&bernie fan! #11 of mi mommas12!punkass.aloha.sugermag.comrades!proud🏳️🌈mom!
Two Being Healthy @TwoBeingHealthy
953 Followers 4K Following Em + Kate, sisters from the health & wellness blog Two Being Healthy. Living life with multiple autoimmune & autonomic issues. #Lupus #POTS #EDS #MCAD #Spoonie
JS @JsLily12
16 Followers 612 Following
Yvonne Garnett @YvonneGarnett
4K Followers 4K Following Im a lancashire lass- now in Heysham. Im happily married to Ian and we have a wonderful son (Tom) and a gorgeous ginger cat called Tango. Loves Burnley FC & F1.
@purplegrandmavapes @ConnieGarvie
125 Followers 624 Following I'm 60 years old and I have bright purple hair! I have 4 children and two grandchildren I adore! I'm active in my church, love Sci-fi, all crafts, She/Her.
Coach Alex VanHouten @JustBetterDaily
1K Followers 866 Following Putting More Faith In Fitness |🎙️ Faithful Fitness Pod Host | 💪 Exercise Scientist and Faith-Based Health Coach | Sneak Peak DEVO | ⬇️
Abby Lajeunesse @AbinormalHmstd
129 Followers 2K Following Opinions rooted in the opression of others are unworthy of respect. She/her. ♿🏳️🌈🦓🦝
Susara @5u5arab
123 Followers 299 Following Clinical Research Midwife and MRes student. Friend of cats, books and tea. Cake aficionado. 🦓🧠💜 Views are my own.
Karina Sturm @KarinaSturm
2K Followers 2K Following Freelance #journalist and #chronicillness advocate living with #EhlersDanlosSyndrome besides others. She/her. Profile Pic: @ohrenflimmern
Good Health Physical ... @goodhealthpt
11 Followers 138 Following Providing high quality, cost effective physical therapy & fitness training services, considering the whole person, in treatment plan development.
Mpho Matseka @ehlersdanlosboy
172 Followers 712 Following Ehlers Danlos warrior, Content creator, Spreading love❤ and Awareness🙏worldwide🌍for Ehlers-Danlos syndromes & Co https://t.co/o5O7UnGXGA
DrLulittle Lucy Lu @DrLulittle
1K Followers 3K Following Photographer,Raver, lingerie connoisseur, owner of @rubitadogita.I have HEDS, CFS /ME & POTS. Advocate & campaigner for fair treatment: invisible disabilities
TryingtoHalt @MarciaConder
55 Followers 152 Following I am nd and live with #ehlersdanlos, lacunar strokes, cte disorder-domestic injuries-,poly and fibro, autoimmune, mitochondrial +, and hope.♿ married #madsawdad
EDS Warrior @bestlifewithEDS
676 Followers 302 Following Living with Hypermobile Elher Danlos Syndrome, mum of three, loves art, food and wine. Tying to find the me in this debilitating chronic illness
MLE ♿️ 🌙 @emily9363
121 Followers 846 Following 26 years old, disabled cutie. Gothic aesthetic with a bit of garden aesthetic (they/she). I RT memes and animal photos. Icon by the lovely @SamiLaBelleArt!
kara white @karawhitester
117 Followers 671 Following
Heather Bradbury @PekingeseMom
109 Followers 201 Following former Crazy Dog Lady living with #MECFS, #EDS, #MCAS, #CCI, #Dysautonomia. Both my career and hobby in dogs ended by chronic illness. USAF Veteran
Bon @BonRoome
9 Followers 469 Following
isavedaspoonforyou @isavedaspoonfo1
67 Followers 123 Following EDS 🦓 MCAS 🦠 Hyper-adrenergic POTS 🥴 Craniocervical Instability 🎈 Hashimotos 😴 AU 👩🏻🦲 Mom 👧🏼👶🏼 Wife 🧔🏻 RN 💉 💛Friend💛
Ehlers-Danlos Support... @ehlersdanlosuk
18K Followers 10K Following 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.
Dysautonomia Intl. @Dysautonomia
26K Followers 350 Following Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
The Ehlers-Danlos Soc... @TheEDSociety
24K Followers 5K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
EDS Awareness @EDSawareness1
10K Followers 3K Following An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
Mayo Clinic Children'... @MayoClinicKids
4K Followers 619 Following Ranked by US News as Best Children's Hospital in Minnesota and the upper Midwest. Offering expertise in over 70 specialty programs and clinics.
Allegheny College @alleghenycol
9K Followers 137 Following Distinctive major-minor combinations. Leader in undergraduate research. Carbon-neutral campus since 2020. #alleghenycollege 💙💛
The Mighty @TheMightySite
50K Followers 2K Following Making health about people: When we ask how you’re doing, we actually want to know! Download our free app to join a community that gets it ✨
Allegheny MWSD @ACgatorsMWSD
287 Followers 100 Following Allegheny Gators Men's & Women's Swimming and Diving. GO GATORS!
Cleveland Clinic @ClevelandClinic
1.8M Followers 1K Following Your source for health news, tips and information from a nationally ranked and globally recognized hospital.
HHS.gov @HHSGov
1.6M Followers 31 Following Official account of U.S. Department of Health & Human Services | Follow @SecKennedy | Privacy policy: https://t.co/2fvEGkrCJN.
World Health Organiza... @WHO
12.1M Followers 2K Following We are the UN’s health agency - #HealthForAll. Always check our latest tweets for updated advice/information. We will respond to mis-and-disinformation.
Mayo Clinic @MayoClinic
2.0M Followers 2K Following An integrated clinical practice, education and research institution specializing in treating patients. Account maintained by @MayoClinic.
CDC @CDCgov
5.5M Followers 246 Following CDC's official source for daily credible health & safety updates from Centers for Disease Control & Prevention. Privacy/comment policy: https://t.co/9LbZmE3Wzg
NIH @NIH
1.7M Followers 229 Following Official account of the National Institutes of Health. NIH...Turning Discovery Into Health®. Privacy Policy: https://t.co/wOGwZ3gX1M Engagement ≠ endorsement
Karma Experiment @KarmaExperiment
874 Followers 4K Following You have been invited to follow the Karma Experiment. Start something positive by sending good karma to everyone of your friends by inviting them to follow.
Team Fight POTS @TeamFightPOTS
3K Followers 253 Following Collection of #POTS bloggers/advocates posting about #Dysautonomia and Postural Orthostatic Tachycardia Syndrome-not cooking, flowers, or weed! Mntnd by Claire
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Genetic Alliance UK @GeneticAll_UK
15K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Rare Disease UK @rarediseaseuk
21K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
EURORDIS-Rare Disease... @eurordis
32K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
RareConnect @RareConnect
18K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.
Rare Disease Report @RareDR
16K Followers 1K Following Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi
EDSWellness @EDSWellnessSol
3K Followers 2K Following 501(c)(3) nonprofit providing EDUCATION, DIAGNOSIS, and SOLUTIONS for ALL hypermobility disorders and related conditions. • @Wellapalooza • @KNMyles
Rare Diseases @CheckOrphan
18K Followers 5K Following CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
EDSAwarenessIreland @EDSIreland
2K Followers 2K Following Irish support group for Ehlers-Danlos Syndrome, and related conditions. Please send us a message to join our private support group! #eds #hms #ehlersdanlos
hypermobility.org @HMSACharity
12K Followers 7K Following Supporting people with connective tissue disorders or hypermobility related health problems, including but not limited to Ehlers-Danlos, Marfan & Stickler etc.
Marfan Support Forum @Marfan_Forum
2K Followers 3K Following Marfan syndrome is an inherited disorder of the body's connective tissue that affects men and women of any race or ethnic group. Join Our forum for more info!
EDS Today @EDS_Today
6K Followers 487 Following Nonprofit - Ehlers-Danlos Syndromes. Sadly, many never receive a proper diagnosis or treatment within their lifetime.
EDS awareness page @Ehlersdanlos
6K Followers 484 Following Support page for Ehlers-danlos Syndrome sufferers.Trends for United States
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