Rare Disease Connect @chronicallysass
Raising awareness for rare diseases #Stiffpersonsyndrome patient Living to be the healthiest I can be while keeping a good spirit, attitude and loving others ❤️ Nashville, TN Joined August 2016-
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Rare Disease Connect retweeted
@colormystripes The lovely @chronicallysass is the Human who runs the FB page. She has been a #Dazzle4Rare OG & absolute awesome person!
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Do you remember when you joined Twitter? I do! #MyTwitterAnniversary
Rare Disease Connect retweeted
Family Raises Zellweger Syndrome Awareness bit.ly/3vRDsrb #RareDisease #ZellwegerSyndrome #PatientStories @camraredisease
Rare Disease Connect retweeted
Anxiety and depression, the unwanted accomplice to #raredisease and #chronicillness some days they take over and all I can do is try to sleep them away
Anxiety and depression, the unwanted accomplice to #raredisease and #chronicillness some days they take over and all I can do is try to sleep them away
Rare Disease Connect retweeted
#raredisease @iPainOfficial: '#Dazzle4Rare - is a cross-community of support for undiagnosed & rare disease awareness. Unlike most awareness events, this week is meant to enable #raredisease communities of all sizes to … , see more tweetedtimes.com/search/%23Rare…
Rare Disease Connect retweeted
United Advocacy Australia @unitedadvocacy unites with non-profit organizations around the globe, helping to raise awareness for many conditions. Let’s #Dazzle4Rare!
Rare Disease Connect retweeted
Rare Disease Connect retweeted
Thank you to these beautiful faces. When you share my message about #RareDisease I reach your family & friends. When I share yours, I do the same. So, what do YOU want others to know about your NPO, advocacy, or personal experience during #Dazzle4Rare
Rare Disease Connect retweeted
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias. #Dazzle4Rare
Rare Disease Connect retweeted
This is why we #Dazzle4Rare. Destan's family bravely share their son's battle with #Covid19 associated #AcuteNecrotizingEncephalopathy "...it was like everything just went away... all the happiness, all the innocence... " youtu.be/DyY-GX2iYv0 @dazzle4rare #ANEawareness
Rare Disease Connect retweeted
Today we are sharing about other organisations, advocates and more as part of #Dazzle4Rare2022... Make sure to follow our posts to learn more... 🧡💚💙 #Dazzle4Rare #WeAreRareFamily #NCBRS #NCBRSRare @dazzle4rare
Rare Disease Connect retweeted
Rare Disease Connect retweeted
#PatientGroups provide the emotional support after a #RareDiagnosis They provide the understanding & medical info needed to make informed decisions about one’s health Without patient groups, rare patients and their families would be left overwhelmed, isolated and misunderstood.
Ugh 😔headlines like this give me serious Ick. There has to be a better way to bring attention to #RareDisease without further ostracizing an already underrepresented community #dazzle4rare #stiffpersonsyndrome
Ugh 😔headlines like this give me serious Ick. There has to be a better way to bring attention to #RareDisease without further ostracizing an already underrepresented community #dazzle4rare #stiffpersonsyndrome https://t.co/MW0znu0h40
Rare Disease Connect retweeted
today on #Dazzle4Rare its the 10th of August ... Ataxia is rare. #Friedreich’s #ataxia, which is the most common type of hereditary ataxia, affects approximately 1 in every 50,000 people. #kNOwATAXIA our #animations at youtu.be/55vB64vdS7c (by @SondraB_RareQoL
Rare Disease Connect retweeted
Want 2 make a difference 4 the #Gastroparesis community? Join us on FB pos.li/2lvq9z or see pos.li/2lvqa0 #Dazzle4Rare
Rare Disease Connect retweeted
#MentalHealth affects us all in different ways when living day to day with #rarediseases & #chronicillness. It doesn't matter whether you are male or female ➡ talking to others & knowing you are among people that also have #anxiety can really help. #Health #Dazzle4Rare
Rare Disease Connect retweeted
We are open to everyone #notjustpatients #Caregivers, + #healthprofessionals are welcome too! 🔵Help us to make this #mentalhealth community work for you 🔵Lets get a #raredisease women's group going to help fill the current void. #Dazzle4Rare #FibroFlutters #ZebraStrutters
Rare Patient Voice @rarepatientvoic
2K Followers 3K Following We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Stephanie Fischer @RarePOV
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Cambridge Rare Diseas... @camraredisease
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The KATT Dazzle @thekattdazzle
430 Followers 510 Following My curse **is** my gift. hEDS+PoTS Intellectual curiosity = my problem. Opinions = MINE. Retweet ≠ endorsements or represent #Dazzle4Rare
MI Rare Coalition @MIrarecoalition
15 Followers 113 Following Dedicated to improving the quality of life for all Michigan residents affected by a rare condition through advocacy, education, and awareness.
CRPS/RSD Angel of Hop... @unrealphanta5m
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amnesia @amnesia1847926
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Canadian Rare Disease... @CanadianRDN
359 Followers 819 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
champs @kejr35778464
169 Followers 1K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
Brigid @notuthi3918
16 Followers 2K Following This world is too dangerous, time should be wasted on beautiful things, love well and be loved well.
Dima Kassem @DimaKassem1818
25 Followers 108 Following Ph.D Anthropology Student, UWO. Research focuses on persons living with rare diseases, their lived experiences and transitions from pediatric to adult care.
Barby Ingle Official @BarbyIngle
26K Followers 25K Following #AZFirst Candidate House #LD7 / #MAHA / Wife of @KenRayTaylor / Business Owner / NP Board Mbr / #Iam #RareDisease #ChronicPain / #GMU
Aaron Carter @AceCarterINQ
7K Followers 6K Following helping on @Sixers beat, women’s sports, HS sports, etc @PhillyInquirer @PhillyDailyNews. “Treat my 1st like my last and my last like my 1st.” #Terp 🇵🇭
Libby Humphris @LibbyHumphris
570 Followers 1K Following Co-lead Public Involvement @EvidenceWales Honorary Research Associate @CUmedicengage Multiple chronic health issues, Crocheter 🧶
KT @sick_but_trying
38 Followers 90 Following Trying to spread awareness & be a resource for those with rare diseases & chronic illnesses.
Rare Disease Clinical... @rare_trial
916 Followers 1K Following 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.
The Neurogenetics Lab... @IonSynapse
975 Followers 691 Following Neurogenetics Lab @UCLIoN led by Prof Henry Houlden | Gene discovery & disease mechanisms in neurological disorders | @LRS_UCL co-led by Profs Houlden & Hardy
raising_rareness (Lyn... @raisingrareness
956 Followers 2K Following Mum of 3 Raising awareness of rare diseases & conditions #2q24.2 Advocating for my daughter & Rare Community 💗 #AAC MA Archaeology UCC Opinions my own
_ @Orion_1820
6 Followers 62 Following Disabled Carpenter/IT Systems Admin. My disability is from Stiff Person Syndrome and CIDP. 2 children and married for 31 years.
Robin Powers-keynote,... @RobinPo54612760
108 Followers 581 Following EMpowering the differently - abled (as no one can do it all) to challenge the status quo when they see injustice. To never quit or back down when you just know.
Tytina Sanders-Bey @Thatmskizzy
321 Followers 1K Following #parent CLC~Doula #socialjusticeadvocate #birthworker #chronicallyill since 2019 #nutcrackersyndrome #pelviccongestionsyndrome fighting to get my health back
IndoUSrare @indousrare
832 Followers 1K Following IndoUSrare is a non-profit public charity organization based in the US, which addresses the unmet needs of diverse patients with rare diseases globally.
NCBRS Worldwide Found... @ncbrsfoundation
287 Followers 440 Following Our aim is to help families by providing practical advice, annual conferences, raising awareness of #NCBRS and possibly help to fund any future research studies
Robin EM-powers patie... @Robin_Lexi
564 Followers 2K Following Amb. for Rare & Chronic Disease Rare in 14225 SUNY Buffalo State BS, Multidis. Grad 2022 District and DC activist author Chronicles of Zazzle & activist.
Flutters and Strutter... @FibroFlutters
3K Followers 4K Following Non Profit for chronic (FibroFlutters) & rare illnesses (ZebraStrutters) Patient Advocacy Organisation Reg. No. 14065901
Andréa Soares @dedeaas
114 Followers 681 Following Especialista em TI Empreendedora em doenças raras 🥰 Fazedora de futuros melhores 🌹 Super tia ❤️
The Sturge-Weber Foun... @SturgeWeber
724 Followers 626 Following Embracing our uniqueness. We may be rare, but we're also one in a million! Awareness and support for those living with SWS, KTS, PWB, Glaucoma, Seizures.
Gillian Sapia RN @GillianHSapia
2K Followers 4K Following Rare Disease mom. Legislative Advocate and Activist. Opinions expressed are MY OWN and do not reflect the views of any organization, employer, or other entity.
Rarity Life @raritylifemag
234 Followers 826 Following A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
SoniyaFit @SoniyaFit
4K Followers 2K Following Ultra-Rare Disease Warrior 🧬 Familial Chylomicronaemia Syndrome (affects 1 in 1 million) | Healing Out Loud
Lysosomal Storage Dis... @LSDSSindia
115 Followers 550 Following Est. in 2010, LSDSS is the first non-profit patient organization in India to bring the subject of rare diseases and LSDs to the forefront of policy discussion.
Laura_TSF @Laura_TSF
95 Followers 401 Following #MOGAD Patient - Increasing awareness of #MOGAD & #NMO 💗 UK ambassador 💗⭐️sign our petition here⭐️➡️➡️ https://t.co/f9Fk5pPEQt
United Porphyrias Ass... @UnitedPorphAssc
180 Followers 288 Following The Future of Porphyria...Raising Awareness, Research and Therapies
Trustworthy AI @ai_trustworthy
21 Followers 374 Following Trustworthy AI in Medicine is my identity and passion.
AdvocacyEve @AdvocacyEve
208 Followers 655 Following Driving empowerment of patients and families within the global #RareDisease community through advancing advocacy, awareness, and collaboration.
@ODExpertGroup @odexpertgroup
625 Followers 3K Following Established in 2020, the European Expert Group on Orphan Drug Incentives brings together representatives of the broad rare diseases community.
International Niemann... @inpdr_registry
207 Followers 311 Following We document the Niemann-Pick patient experience to advance research and improve lives.
may @May_OH
4 Followers 167 Following
DrPasEle @DrPas84Ele
2K Followers 5K Following Communication | Advocacy | Policy | #Neuroscience #PhD | Founder n President of #RareSpecialPowers | #rarediseases | #pinksocks | Own views
American Porphyria Fo... @Porphyria_Help
1K Followers 454 Following Educating, advocating, connecting patients & supporting research for the prevention, treatment & cure of #porphyria #PorphyriaStrong 💜 #porphyriawarriors
ausEE Inc. @ausEEorg
696 Followers 2K Following ausEE Inc. is Australia’s peak national support and patient advocacy organisation representing Australians living with an eosinophilic disease.
GYN Cancer | #GYNCSM @gyncsm
6K Followers 6K Following #gyncsm - a community for those impacted by gynecologic cancers Co-Founders: @womenofteal @btrfly12 Healthcare Moderators: @ShannonWestin @NitaKarnikLee
Inflammatory Neuropat... @InflamNeuroUK
1K Followers 593 Following Previously GAIN - We're the only charity dedicated to supporting people impacted by GBS, CIDP, MMN, and other Inflammatory Neuropathies in the UK and Ireland
SYNGAP1 Foundation @Syngap1Fnd
3K Followers 3K Following SYNGAP1 Foundation is a legacy page dedicated to preserving the work and mission of our 100% charitable nonprofit in the USA, focused on #SYNGAP1
MCDS-Therapy @MCDS_Therapy
699 Followers 2K Following An @EU_H2020 funded clinical trial for the treatment of #RareDisease MCDS. Any related tweets reflect only the views of the project owner.
MAGIC Clinic @magic_clinic
76 Followers 131 Following M.A.G.I.C. stands for Metabolics and Genetics in Calgary. We are a medical clinic that specializes in looking after patients with rare genetic disorders.
Oxford-Harrington Rar... @OHRareDisease
1K Followers 903 Following Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
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.
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
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
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
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
The KATT Dazzle @thekattdazzle
430 Followers 510 Following My curse **is** my gift. hEDS+PoTS Intellectual curiosity = my problem. Opinions = MINE. Retweet ≠ endorsements or represent #Dazzle4Rare
Office for Rare Condi... @ORCGlasgow
2K Followers 1K Following The Office for Rare Conditions aims to raise awareness of rare conditions, enhance the quality of care provided & promote participation in multi-centre research
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.
Candi Mathis @CandiMathis
10K Followers 7K Following Little, loudmouthed VFL. Still deciding between Kenny Chesney & Matt Kemp. Obama worshipping, @JoeBiden voting, FDR quoting, STL Cards fan. #KHive 💛🐝 🍊🏈 ❤⚾️
ANE International @aneinternationa
770 Followers 857 Following We aim to raise awareness, provide information & support families with #AcuteNecrotizingEncephalopathy ANE is typically triggered by #Influenza & other viruses.
John McFall @JohnnieMcF
13 Followers 44 Following
Babington @mericksmom
592 Followers 873 Following Living the fast life with invisible chronic illnesses, collecting more as I go on, confusing every doctor I meet, all while playing wife and mom.
𝖺𝖻𝗂𝗀𝖺�... @aeh5829
216 Followers 163 Following act justly. love mercy. walk humbly :) @benji_coughlin ♡
Michele Tillery💜 @michelebrooks
1K Followers 1K Following #Kamala4President2024 💙I’mWthHer💙#BlueWave
iamokaynow (Deb) @iamokaynow
2K Followers 2K Following Do you have gastroparesis, colonic inertia, CIP-Motility issues? #Chronic Migraines? You are not alone! #Mitochondrial Disease #POTS? #CureGP #Cures #Advocacy
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.
April GQG @GpGQueen
346 Followers 262 Following Founder: https://t.co/zmth30vWHG In love you find truth; through truth you find freedom! #patientadvocate #asdmom #domvsurvivor
Savvy Cooperative | #... @savvy_coop
4K Followers 3K Following Health innovators have questions. Patients + caregivers have answers. Creators of the #AskPatients Lounge™️, coming to a conference near you!
Lisa Davis Budzinski @Cpnervecenter
1K Followers 2K Following I use humor 4 distraction from #intractablepain. Sharing all views for perspective & entertainment purposes
Jen Hardy @thejenhardy
1K Followers 1K Following • CEO Hardy House Media • Jen Hardy Show • YouTube https://t.co/s7MACW156B Glamorously Grounded on YouTube https://t.co/YmOhiGVzrQ
Mary Bates Brachaniec... @brachaniec_mary
1K Followers 2K Following Past Member, HSO LTC Services National Standard Tech. Committee, Care Partner- U. of Regina Dementia & Pain Team, & CIHR CPN Patient Partner.
Linda @losingnerves
383 Followers 2K Following Wife, mother, freelance writer, poet, artist perched on handlebars of a swerving bicycle wrangling CMT, Spinal injury, Celiac, etc. #ChronicPain
Cathy Mumford @pbcadvocate
290 Followers 232 Following Primary Biliary Cholangitis (PBC) patient & advocate, a rare disease zebra. @PBCers, @Wegohealth & @brkthrough_crew. 🗝PBC is like an iceberg, 90% unseen.
XRC20 @XRC2O_Official
5K Followers 5K Following World first inscription for social Official tg : https://t.co/nNuJ3cMGvT
showingmystripes👩�... @ShowingStripes
665 Followers 505 Following Marie Harman: Metabolic Disorder/Mito Dysfunction. Power Soccer player and Disability Awareness Speaker. Blogger at https://t.co/DWkKzbokIL. #zebrastrong
JusticeSeeker @2SickToStop
511 Followers 517 Following “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” —Margaret Mead.
The CLF @CambriaLord
52 Followers 82 Following
Raregirl @DempseyKarolena
141 Followers 226 Following Patient diagnosed with Schnitzlers Syndrome and Patient Advocate for those diagnosed with Rare Diseases / Disorders
Carl David Ericson @cdericson
42 Followers 143 Following 1 in a million w/ extremely rare Stiff Person Syndrome. Disease truly sucks. Want to move back to Oregon coast so I'm looking at Pacific Ocean when I die.
SamebutDifferent @SBDRareProject
2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
NIHR RD-TRC @RareDiseasesTRC
488 Followers 110 Following We are the NIHR Rare Diseases Translational Research Collaboration (RD-TRC), and we support research programmes in a wide range of rare diseases.
Chronic Comforts @chroniccomforts
752 Followers 237 Following Im Laura, owner of Chronic Comforts & a Disabled /blogger/crafter/designer and disability rights advocate https://t.co/HFOVBH65lg
Princess, The Tower @APainPrincess
28K Followers 27K Following Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Michelle Olson @JoyHunt1976
23 Followers 86 Following Woman, wife and mother living with a 1-in-one-million rare disease. Living life to it's fullest one day at a time. Humanitarian Nonprofits Politics Health
David Schapira @dschapira
12K Followers 521 Following Father, educator, California Chief Deputy Superintendent of Public Instruction, Chief of Staff of the California Department of Education
Andrei Cherny @AndreiCherny
31K Followers 5K Following Dad, husband, citizen. Fighting for Truth, Justice, and the American Way.
GreenFi @greenfibanking
85K Followers 3K Following 🌎 The green banking alternative that is good for your wallet and good for the planet. Spend, save, and invest while fighting climate change. Apply online.
Merck Manual Home @MerckManualHome
19K Followers 423 Following An online medical guide for the whole family. This site is intended for US and Canada residents only. https://t.co/FNJKJdNGIA
Merck Manual Pro @MerckManualPro
24K Followers 1K Following Now online, the Manual has been trusted by medical professionals for 100+ yrs. This site is intended for US and Canada residents only. https://t.co/c0UnzvwHm6
SanfordCoRDS @SanfordCoRDS
4K Followers 2K Following CoRDS is the world's only cost-free, international #RareDisease #PatientRegistry - Enroll today and share your #data! https://t.co/DOIhiNxbbF
World Orphan Drug Con... @OrphanConf
5K Followers 870 Following Get regular updates on #WorldOrphanUSA! June 9-11, 2026 | Boston Convention & Exhibition Center
PSR Orphan Experts (n... @PSRorphan
5K Followers 3K Following We’ve moved! PSR Orphan Experts is now Ergomed. To stay updated on future news, please follow us on the Ergomed Twitter page at https://t.co/mWUAHD63Iq
Rare Genomics @RareGenomics
9K Followers 3K Following RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.Trends for United States
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