CaringVoiceCoalition @CVCinc
CVC is dedicated to improving the lives of people with chronic illness—our programs include disability and travel assistance, and health insurance counseling. caringvoice.org Richmond, VA Joined September 2011-
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A great piece on Huntington's disease in the Observer. Includes an interview with Prof Sarah Tabrizi, HD Centre Director. theguardian.com/science/2019/m…
Medicare Advantage—the private plan add-on option in the Medicare program also know as Part C—has new flexibility to cover expenses such as transportation or caregiver support. caringvoice.org/medicare-advan…
It's World #RareDiseaseDay. Here's our staff sharing why they #careaboutrare #WRDD2019
#RDDNIH is on Thursday! If you can’t attend in person, watch live at bit.ly/2GHocVT. ncats.nih.gov/rdd
“#Need. But I’m terrible at it 🤨”: buff.ly/2Ss2d6r #sleep #selfcare #painsomnia #chroniclife
From Shaun who's living with Huntington's disease: "All the time I’m awake and speaking and fighting, they’re working on cures and learning things and that could mean a lot more time. I think as long as I remember that I’m good for the fight." caringvoice.org/good-for-the-f…
Still looking for ways to get involved in Rare Disease Day this year? Check out all the different things you can do to be a part of the campaign>> rarediseaseday.org/article/get-in… #RareDiseaseDay #ShowYourRare
Note to self #chiarimalformation #chronicillness #chronicpain
"Modest Needs provides small, no-strings-attached, #financialgrants for short-term immediate crisis situations for working #families": buff.ly/2HAtyhE @CVCinc #HealthCareForAll #chronicillness #medical
Do you understand balance billing? Learn a little about when it is and isn't legal to help you navigate #SurpriseMedicalBills caringvoice.org/understanding-…
Having reliable information is key for making informed health care decisions. Visit the Genetic and Rare Diseases Information Center for current and easy to understand information about genetic and #RareDiseases in English or Spanish. #RDDNIH @ORDR bit.ly/2FEs4FR
Nearly one third of Americans received medical bills they didn’t expect in 2014. We collected five tips for avoiding and navigating surprise medical bills. #healthinsurance caringvoice.org/navigating-sur…
Have you made a plan for your financial future? Save yourself heartache later by thinking through a few things today: caringvoice.org/planning-for-y…
#HDWorkoutTips with #ShanaVerstegen. For more info about #HuntingtonsDisease & the #HDSAFamily please visit HDSA.org 📺youtube.com/watch?v=goA-WZ… #WednesdayWorkout #LetsTalkAboutHD @shanamartin
Before you consider a short-term health insurance plan, be sure to understand their limitations. Here's a guide: caringvoice.org/short-term-hea…
A recent study has shown, for the first time, that companies that championed people with disabilities actually outperformed others — driving profitability and shareholder returns. nytimes.com/2018/12/27/opi…
Your insurance plan is about to begin its 2019 coverage. We’ve collected three things you can do before then to hopefully save you money and heartache. caringvoice.org/getting-the-mo…
From $1,500 toenail cream to a $109,000 heart-attack bill, relive these medical billing horror stories in our KHN/@NPR #BIlloftheMonth club. khn.org/ODkzNDA3
It's the #FirstDayofWinter and the #WinterSolstice! Listen to Dr. Samer Hattar, chief of the Section on Light and Circadian Rhythms at NIMH, on @NPR's Morning Edition. He discusses the results of a study that may explain how light exposure influences mood. n.pr/2Gxd52w

The Pulmonary Hyperte... @PHAssociation
7K Followers 3K Following Our mission is to extend and improve the lives of those affected by pulmonary hypertension.
Team PHenomenal Hope @teamphhope
5K Followers 792 Following Racing to make a difference in the lives of those with pulmonary hypertension. #LetMeBeYourLungs
HDSA @HDSA
6K Followers 1K Following The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease.
phaware® @phaware
9K Followers 9K Following Help make the 🌎 #phaware. Pulmonary hypertension (PH) is a rare, life-threatening disease of the lungs that can lead to right heart failure. 💜💙💚🧡❤️
Scleroderma Canada @SclerodermaCAN
3K Followers 2K Following Scleroderma Canada is committed to promoting public awareness, supporting those affected by Scleroderma and funding research to find a cure.
SRFCure @srfcure
3K Followers 2K Following America’s leading nonprofit investor in medical research aimed at finding better treatments and, ultimately, a cure for #scleroderma.
Genetic Counselors @GeneticCouns
15K Followers 593 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
Auproooogirx @Auproooogirx18
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Nickicaroline1 @Nickicaroline1
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Una @Una1846326
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FrequenCell @FrequenCell
1K Followers 6K Following * Frequency Therapy Wearable Tech * Our mission is to empower people to lead vibrant and pain-free lives with 100% safe, natural, non-chemical methods.
Caring Connections Ho... @trustedbysenior
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Anusha Kosta @PediatricsMeets
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Ava_Brown @AvaBrown486315
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Whasaset @whasaset40510
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Melvina @tatesheigh56896
20 Followers 2K Following The years are still long, and if you are kind-hearted, there will eventually be someone to accompany you on horseback, drinking and traveling around.
ShopTravelFinds @shoptravelfinds
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Amhara @GenocidalState
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CranioCervicalInstabi... @CranioUnstable
707 Followers 3K Following My entire adult life has been a daily struggle with #cervicalspine instabi(ity symptoms, and now totally disabling and untreated #CCI and #MECFS. Please help!
Todayisagift @Todayisagift802
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SWAN Australia @swanaus
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GREGoR Consortium @GREGoR_research
876 Followers 445 Following Discovering causes of rare disease through innovative technology and vigorous collaboration. @NIH-funded. Tweets by Data Coordinating Center @UWBiostat.
Feedkast @_Feedkast
140 Followers 2K Following The latest Medical Articles for HCPs - Pharmamarketing is our business, curated and customized content is our passion. Download in the Appstore and GooglePlay.
SERVPRO Chesterfield @SERVPROchester
41 Followers 556 Following #SWaM Certified, Clean up, Restoration & Rebuild Company, #Fire, #Water, #Mold, #HVAC #cleaning 804-378-2323 #Chesterfield #TriCities #Richmond #RVA
Orkney Fibromyalgia S... @OSufferer
4K Followers 5K Following Writer, aspiring speaker, blogger, Advocate for Fibromyalgia & Invisible Disabilities. Fibromyalgia, FND & MECFS sufferer for over a decade.
Affirm Patients @affirmpatients
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Oxygen Concentrator @FionaFa86272380
236 Followers 5K Following Portable miniature intelligent 1.8kg 6L/min pulse flow 96% concentration oxygen concentrator Email: [email protected] Wechat:+86 18913373995
thornburger🧬 @GcThornburger
133 Followers 178 Following Sarah Lawrence Genetic Counseling🧬Class of 2023 LA 🇲🇽🌴💙➡️ NY 🗽 (she/her)
IPM.ai @ipm_ai
110 Followers 881 Following Utilizing ML, AI and RWD to find, engage and educate specialty and rare disease patients who could benefit from life saving therapies
Helen Beneddit @HBeneddit
358 Followers 1K Following Artist - Music - Comedy - Listener 🪔 Transplant recipient - Loves Dancing and Writing - Thankful to my donor and their family 💙 #bekind #Evusheld
ONE HUNDRED @1hundredagency
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Georgiana @mybeautifulTr
780 Followers 2K Following Author, Speaker, Educator https://t.co/NiTrfvdS6Z purplemaynz-instagram
Get-e @get_e_
129 Followers 320 Following Get-e is a B2B partner to manage global ground transportation in 110 countries.
Gauchers Disease @gauchers3
33 Followers 45 Following Living the rollercoaster world on Type 1 Gaucher’s Disease. Late 20s, male, living in London, UK. Diagnosed in 2009. On Cerezyme Enzyme Replacement Therapy
PHAustria_InitiativeL... @Phaustria_
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FleishmanHillard TRUE... @true_global
70 Followers 141 Following The Research and Measurement team of @Fleishman. We connect data, strategy, and insights that guide and inform communications and strategy.
SpineNation @RealSpineNation
998 Followers 2K Following #1 Online Community for Back, Neck, and Spine. Be supported, educated, and inspired to live your best life w/ chronic spine conditions.
Sara @afsml1
506 Followers 5K Following Mama, physician, vegan #Resistance #docsforgunsense #ThisisOurLane #ClimateChange #Humanrights #BLM Opinions my own & don't represent my employer.
Rayne @ThePainReports
20 Followers 16 Following Just another chronic illness warrior documenting their struggles with pain, fatigue and the general shit show that is invisible illness!
Don Moores @moores_don
1K Followers 1K Following President & COO Kamloops Blazers, motivational speaker. Humble advocate of children with idiopathic Pulmonary Hypertension.
Alice Lee @alee7095
2K Followers 4K Following This is a second account from @pepperpell. I have HD mutated gene and promoting awareness to rare diseases and HD/JHD while I can.
The Lupus Liar @thelupusliar
2K Followers 3K Following Why live with Lupus? Lupus lives with you. #Redefine living with #LUPUS. Tell it where, what, and when. Because Lupus is a liar! https://t.co/bplHX8RPhS
Pamela @pain_prejudice
1K Followers 5K Following A Modern Day Hippy. Wife. Mom. Animal Lover. Peace and Love! Fighting hard against RA, Fibromyalgia, Small Fiber Neuropathy. Chronic Pain Patient Advocate!
Tina Goble @TinaGoble5
90 Followers 724 Following I am a 43 year old female I have been living with a rare lung disease since 2003 pulmonary hypertension as found secondary FROM another autoimmune disease SLE.
annie watson @helixchic
15 Followers 570 Following
Camille Caregivers @Camilecaregiver
1K Followers 4K Following Whether help is needed for a few hours a week, or around the clock, Camille Caregivers can attend to your in home needs in the comfort of our own home. Service
Free Thinker @TamaraKnapp
41 Followers 434 Following
Disability Hub @disability_hub
308 Followers 650 Following Join Disability #Community Hub #Facebook #group. #Share what you know about #Disability https://t.co/1wzZMRfgCq
The Pulmonary Hyperte... @PHAssociation
7K Followers 3K Following Our mission is to extend and improve the lives of those affected by pulmonary hypertension.
Team PHenomenal Hope @teamphhope
5K Followers 792 Following Racing to make a difference in the lives of those with pulmonary hypertension. #LetMeBeYourLungs
HDSA @HDSA
6K Followers 1K Following The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease.
phaware® @phaware
9K Followers 9K Following Help make the 🌎 #phaware. Pulmonary hypertension (PH) is a rare, life-threatening disease of the lungs that can lead to right heart failure. 💜💙💚🧡❤️
Scleroderma Canada @SclerodermaCAN
3K Followers 2K Following Scleroderma Canada is committed to promoting public awareness, supporting those affected by Scleroderma and funding research to find a cure.
Pulmonary Hypertensio... @PulmonaryNews
5K Followers 1K Following We are dedicated to sharing the latest news, research, and PH patient perspectives.
Genetic Counselors @GeneticCouns
15K Followers 593 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
KFF Health News @KFFHealthNews
187K Followers 1K Following A national newsroom that produces in-depth journalism about health issues; a core program of @KFF. Also publishes @CalHealthline.
Independent Sector @IndSector
35K Followers 6K Following We are the national membership organization that connects, strengthens, and advocates for nonprofits and philanthropies.
The Chronicle of Phil... @Philanthropy
201K Followers 3K Following News, resources, advice, and commentary about the nonprofit world from The Chronicle of Philanthropy.
Council on Foundation... @COF_
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Atlantic Research Gro... @argcro
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Mike Porath @mikeporath
952 Followers 1K Following Created @themightysite to help empower and connect people facing disabilities & diseases. Formerly @nytimes @nbcnews @abc @aol
Exponent Philanthropy @exponentphil
10K Followers 2K Following The largest U.S. membership association for funders & the only one dedicated to foundations, families & individuals who give with few or no staff.
ProjectStreamline @ProjStreamline
421 Followers 137 Following A collaboration of grantmakers and grantseekers working to improve grantmaking practices. No new Tweets here; see @PEAKgrantmaking for more.
Candid Learning for F... @GrantCraft
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HDSA New Mexico @HDSANewMexico
409 Followers 82 Following We are a national non-profit voluntary health agency dedicated to finding a cure for Huntington's Disease.
HDSALosAngeles! @HDSALosAngeles
596 Followers 468 Following Official twitter account for HDSA Los Angeles.
HuntingtonStudyGroup @HuntingtonSG
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HD Reach @HDReach
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kneecola @onherway29
115 Followers 560 Following RT, trichotillomania, trying to conceive, low carb, weight loss, medical, 420, Hashimoto, art, lit, diy
@CherylLenheiserLCSW @CherylLenheise1
6 Followers 38 Following Licensed Clinical Social Worker for the South Central Region of HDSA
Remember The Girls @remember_girls
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Ronni Higger @RonniAllison1
648 Followers 5K Following I love health. I love inclusion. And I love to grow businesses.
Ryan Lonnett @rlonnett
87 Followers 195 Following Happily married father of 3, lucky to have great extended family & friends. Passionate about food, travel, wellness & community. Change agent. Ever forward!
Dream Day on Cape Cod @dreamdaycapecod
407 Followers 259 Following Providing seriously ill children and their families free, life-changing experiences through the joy, camaraderie, and respite of camp on Cape Cod, MA.
Anthea @antheaw
963 Followers 585 Following Fancy nail tech nerd with a chronic headache and a cute cat. 💕🐱👾🛌✨💅🏽🏳️🌈🦄 Ngāti Pōrou, Ngāpuhi, Irish/Pākēhā. She/her
ThinkGenetic, Inc. @ThinkGenetic
1K Followers 1K Following Finding individuals in need of a diagnosis. Supporting pharma, research institutions, and healthcare systems. #RareDisease #ai
Sarah Karlin-Smith @SarahKarlin
17K Followers 3K Following Covering intersection of pharma, policy & politics for @pharmapinksheet. Past @smpagwu adjunct, @politico. Signal: SarahKarlinSmith.34
Sarah Kliff @sarahkliff
128K Followers 1K Following Investigations and health policy for the @nytimes. I like reading your medical bills.
Charles Ornstein @charlesornstein
55K Followers 4K Following Managing editor/local at @ProPublica, past prez of @ahcj, Detroit Lions fan. Email: [email protected] Tweets are my own.
Katie Thomas @katie_thomas
10K Followers 546 Following New York Times reporter writing about health care. Send a secure tip here: https://t.co/ZWFeW4qOHE
PTEN Foundation US @PTENFoundation
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196 Followers 150 Following Daughter and I fighting Cowden's Syndrome. 1 in 200,000. Rare. Invisible. Real. Tumor growths, malignancies, vascular malformations, pain. Raise Awareness!
Flaredown @flaredown
1K Followers 2K Following https://t.co/EC0OCSSNoH is a simple way to track chronic illness to find symptom triggers and test your treatments. Made by patients for patients.
Chloe Temtchine @ChloeTemtchine
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#riseupforhd @riseupforhd1
117 Followers 145 Following Live in the moments. Join us on our Fb page #riseupforhd
Brad Frost @brad_frost
114K Followers 553 Following I'm sad to have to leave, but I have to. You can find and follow me elsewhere: https://t.co/hPY38PkKxR
Chris Coyier @chriscoyier
236K Followers 3K Following Co-founder @CodePen. Podcasts @ShopTalkShow. Married @jmm. Ran CSS-Tricks 2007-2022. I like it when you like things.
Global Times @globaltimesnews
1.9M Followers 549 Following China's national English language newspaper, under the People's Daily. Apps: https://t.co/S9E7BpY53Q
Google Analytics @googleanalytics
1.2M Followers 369 Following Get the latest news and product updates on Google Analytics, Tag Manager and the Google tag. Learn more at https://t.co/90zQzLnANJ
Intuit Mailchimp @Mailchimp
245K Followers 14K Following We help you understand your customers’ individual needs by treating them like individuals. Take them out of the clustomer with our personalization tools.
Huff/Post50 @huffpost50
25K Followers 1K Following News, features and the best blogs on topics that matter most to people over 50. Follow us here and on Facebook: http://t.co/LXny6wELTH
Nancy LeaMond @NancyLeaMond
6K Followers 1K Following AARP EVP: advocacy, lobbying, education & volunteers.
AARP Advocates @AARPadvocates
44K Followers 3K Following Nonprofit. Nonpartisan. We work with our members and advocates to fight to lower Rx prices, strengthen Social Security and Medicare, and more.
PH Serbia @PHASerbia
281 Followers 211 Following Plućna arterijska hipertenzija je teška, retka, progresivna i smrtonosna bolest. Bez lekova preživljavanje pacijenata koji su uglavnom mladi iznosi manje od 3 g
PHA Special Events @PHA_Events
21 Followers 18 Following
Pulmonary Wellness Fo... @PulmWellness
2K Followers 2K Following Cardiovascular, Pulmonary, Complex Medical Rehabilitation, Education and Research
PHAAustralia @PHAAustralia
503 Followers 115 Following Pulmomary Hypertension Association Australia - supporting PH patients, their families and carers - education and awareness - Together We Are Stronger
WomanPlace @place_woman
579 Followers 2K Following Entrepreneur, Skin Care Advisor at Beauty Society, Inc at WomanPlace; #Womensrights; #Defenderofwildlife; #Skincare;
Pascal Meier,MD @DrPascalMeier
110K Followers 110K Following Professor of Cardiology, UK🇬🇧 & CH 🇨🇭- Past Editor-in-Chief @Open_HeartBMJ. #Cardiology❤️ #Ukraine 🇺🇦
Pulmonary Circulation @PulmCirc
1K Followers 440 Following Medical research journal devoted to the field of pulmonary vascular disease, #pulmonaryhypertension and lung injury. RT or follow ≠ endorsement.