Center For Latino Patients With CF @LatinoswithCF
Our mission is to improve the health and quality of life for Latino patients with Cystic Fibrosis through research, education, advocacy, & patient engagement. latinoswithcysticfibrosis.org Seattle, WA Joined March 2020-
Tweets51
-
Followers155
-
Following185
-
Likes45
📅 October 3 at 2 p.m. ET: Join us for the next NIMHD Director’s Seminar to explore the history and impact of residential segregation on Hispanic and Latino health with Dr. Rudolph Rodriguez from @UWDeptMedicine. bit.ly/3zhdm5x #NIMHDSeminar #HispanicHeritageMonth
A cohort study in @PedPulmonol examines racial and ethnic disparities in cystic fibrosis detection in the California newborn screening program buff.ly/4e7whiD #ebneoalerts #equity4babies #EBNEOEquityAlerts #neotwitter #neoEBM
For Hispanic Heritage Month, we celebrate all the Latino/Hispanic people with cystic fibrosis and their families! #HispanicHeritageMonth
Cystic fibrosis gene mutations that are more common in Hispanic or Latino people are not included in many newborn screening programs. This means families are incorrectly told their child does not have CF
“Parents are told, ‘Your child had a normal newborn screen. You are crazy.’ It’s becoming a barrier to care. That’s the opposite of what it was meant to be,” @DrMeghanMcGarry said. Why do so many families have to fight for a diagnosis? nytimes.com/2024/05/29/wel…
Happening tonight! Please join our virtual #cysticfibrosis educational session! eventbrite.com/e/genetica-y-d…
Los temas incluirán: -¿Qué causa la FQ y la genética? -Formas de ser diagnosticado: detección neonatal, síntomas, pruebas genéticas. -Aspectos únicos de la FQ en individuos Latinos ¡Habrá tiempo para responder y discutir todas sus preguntas! Abierto a todos
¡Venga a aprender más sobre la genética y el diagnóstico de la fibrosis quística (FQ)! @CFRI_CureCF con el Centro de Latinos con Fibrosis Quística invita a individuos Latinos con FQ o padres/cuidadores de niños Latinos con FQ a unirse a una sesión educativa en Español y Inglés
But most important the medical community needs to treat all people with kindness respect and compassion.
We need newborn screening and genetic tests that work in ALL populations. We need to change education and teaching so all medical providers know CF occurs in ALL races and ethnicities
Come visit our table to learn more about @LatinoswithCF at the @CFRI_CureCF Research conference starting tomorrow!
#CFRIConference: JULY 28–30! Our 2023 Conference is a hybrid event held in-person (Redwood City, CA) and via live, online interactive platform. Enjoy presentations on #Phage and #mRNA therapies, #StemCellResearch, #CFparent-hood + more! cfri.tiny.us/CFRI-Conferenc… #cysticfibrosis
Grateful to @CDCgov @CF_Foundation and The Legacy of Angels Foundation for supporting our work to achieve equity in CF diagnosis @LurieChildrens @ManneResearch @noaacf @DrMeghanMcGarry luriechildrens.org/en/news-storie…
💥 new research adding new to the knowledge about health disparities in Latino and Hispanic people with CF!
📡 New research from @UCSFChildrens in @JournalofCF Ethnic Differences In Acquiring Staph. aureus in children and young adults with cystic fibrosis. 🔗tinyurl.com/StaphCF
Cystic fibrosis occurs in children of all races and ethnicities around the world
If you are affected by the recent changes @vertex has made, please reach out and talk with your #cysticfibrosis team
‘Caught in the middle’: A battle between @vertex and insurers is leaving cystic fibrosis patients with crushing drug costs statnews.com/pharmalot/2023… via @statnews
A new #cysticfibrosis diagnosis is scary enough; imagine if you couldn't get accurate information about the disease in your native language. This is what happened to Cesar & Nora Hernandez, whose 16 y/o son Alex has #CF. Hear more from them in our upcoming #CFMasterClass series!
Please watch and share with the #Hispaniccommunity @LatinoswithCF @Latina @latpress
A new #cysticfibrosis diagnosis is scary enough; imagine if you couldn't get accurate information about the disease in your native language. This is what happened to Cesar & Nora Hernandez, whose 16 y/o son Alex has #CF. Hear more from them in our upcoming #CFMasterClass series!
What percent (%) of patients with CF are Hispanic? If you missed our October PINE 🌲session on CF presented by Dr. Pryor of @DenPulm you can watch it on this link: thoracic.org/members/assemb… #cysticfibrosis #disparities #PINE
“It’s racism. It’s medical racism. It’s systemic racism. From the training for doctors to clinical care. The only difference is my child is Latino” #cysticfibrosis #talesofmissednewbornscreening
CF News Today @CFNewsToday
5K Followers 2K Following Your source for cystic fibrosis news, support, & real stories from the community. Let’s raise CF awareness together!🎗️
Prof. Dr. rer. nat. M... @michael_kormann
917 Followers 2K Following Professor. Maurizio Vignola Award Winner. ERC grantee. We lost open genomics — I won’t watch AI repeat it. Coining #computefreedom. Peer review is folklore.
Daphney Hessel @DaphneyHes54900
16 Followers 2K Following
Josie Schaeffer @josie_schaeffer
238 Followers 222 Following Executive Director @CF_Foundation Maryland.
Lokesh Guglani @LGuglani
67 Followers 479 Following Pediatric Pulmonologist. Taking care of children with lung disorders. Always asking questions... Seeking answers...
suman bisht @bliveinurself23
3 Followers 59 Following
Haley Anders @HaleyAnders3
27 Followers 797 Following 🎚God comes 1st,💜#cysticfibrosis 🧬 DF508🫁N1303K,🌈#LGBT🌈, 🐶Dog Mom,💊Addiction Recovery, #wecanrecover #CFFoundation
_laurenclayton_ @laurenclayton__
67 Followers 135 Following Respiratory physiologist 🫁 | PhD researcher @UoPSportScience - Exercise physiology in cystic fibrosis during the modulator era 👩🏼⚕️🫁🚴🏼♀️ @CFwarriors
DJ Mega Aim @djmegaaim17
45 Followers 222 Following Hi this is Anthony McDaniel. I am content creator that makes music, podcast, videos, livestreams on Cystic Fibrosis, Anime, Music, Video Games, etc.
Melodie Ramone @Melodie_Ramone
76K Followers 31K Following Author. Mom to autonomous wild things. Cystic Fibrosis Advocate. Certified Kitchen Witch. A Goddess with a Godzilla twist. I am my mother's savage daughter.
Gaby Ycaza | 🇪🇨... @the1andonlyGABY
842 Followers 3K Following IMG | CCRC manager @columbiamed | ExecMPH’25 @columbiahpm | GCSRT’23👩🏽🎓@harvardmed | Adjunct Faculty AMG👩🏽⚕️👩🏽🏫 |PIMG 🇪🇨|🌎de las bellas 🌴🌴 🌴
Computer Bob Emmelkam... @cbtweeter
571 Followers 3K Following Community Servant, Philanthropist, On a lifelong mission to cure cystic fibrosis, Solar Powered & Tesla driven, Deliverer of Hope via latest CF research news
sandeep dewangan @devsandy14
5 Followers 15 Following Enjoying every moment of life without any expectation
JODIE MORGAN @CFCHAMP12
23 Followers 105 Following You never know how strong you are , until being strong is the only choice you have 💫
Colleen Rue @ColleenRue23198
30 Followers 465 Following
Tati Ra. @TatianiRamina
33 Followers 325 Following
beth Vanstone @bethdenniss
441 Followers 235 Following Podcast Producer @TheBonnellFoundation Liaison @UofT Pharmacology Dep Former Director @CFGetLoud , Advocate for Cystic Fibrosis and the rare disease community.
Rae Alder @AuthenticlyRae
33 Followers 130 Following Advocate, Speaker, and Fighter: Cystic Fibrosis, EDS, POTS. Advocating for equity & our right to authenticity ✊🏾 ♥︎ 🏳️🌈
PhagesKIPRE @PhagesIPR
1K Followers 3K Following Phages @DrAtunga's Lab Phages for AMR, biocontrol, decon & display Email: [email protected].
EOS Worldwide @EOSWorldwide
6K Followers 4K Following The Entrepreneurial Operating System® combines timeless business principles with powerful tools to help entrepreneurs get what they want from their businesses.
Rebecca Calthorpe @DrRCalthorpe
159 Followers 264 Following East Midlands Paediatrics Trainee. CARDS-CF Clinical Research Fellow investigating gut symptoms in CF
Grant Turner, MD, MHA... @GrantTurnerMD
813 Followers 888 Following He/him/his. 🏳️🌈. Lung Transplant and Cystic Fibrosis Physician. Lung Txp Fellowship Director. #QI, #patientsafety, #advocacy, #meded. Tweets mine, not advice
Gayle Pledger @gayle_pledger
573 Followers 624 Following 🫁 CF mum 🌍 Global campaigner 💊Trikafta4all 🏆’Big Issue’ Changemaker 2025. Founder@VertexSaveUs, ‘Right to Breathe,’ working@JustTreatment. Views my own.
Laura Teicher Bonnell... @LauraTbonnell
2K Followers 2K Following Covered breaking news in Detroit. Founder of the Bonnell Foundation: helps families w/ cystic fibrosis. [email protected]
Marrah Lachowicz-Scro... @LachowiczMarrah
1K Followers 3K Following Branch Chief, Lung Development and Pediatric Diseases Branch, Division of Lung Diseases, NHLBI. Any opinions expressed are my own not the views of my employer.
Linda Jenny @LindaJe57135881
15 Followers 466 Following
Mark Tremblay @MarkTre88197226
21 Followers 126 Following 50 year old sober biker with Cystic Fibrosis liv’in out loud
CF Vests 4 Life @cfvests4life
292 Followers 1K Following We are a Nonprofit Organization that provides CF equipment to add more mornings to the lives of CF Warriors the world over which was established June 2020.
Kim Lu @KimLuMD
349 Followers 310 Following Pediatric pulmonologist | Asthma health |Tweets are not medical advice!
Maude Perrine -Writer... @MaudePerrine
2K Followers 3K Following Author of 'Love you' & audiobook narrator 📚🎧 Cystic fibrosis & diabetes warrior 🫁💜 Spoonie🥄Married 💍 #cysticfibrosisawareness
Jane Gross MD @JaneGrossMD
244 Followers 243 Following Pulmonologist @NJHealth. Physician scientist. Cystic fibrosis 🫁 NTM research. Mom. Army Vet. Advocate. 🏄♀️ 🏝️ aficionado. Views are own. (she/her)
Kim Novak - The Readi... @CFPharmD
778 Followers 790 Following CF Clinical Pharmacist & PGY2 Peds Pharm RPD @ Nationwide Children's Hospital. I ❤️books, food, & travel. Tweets solely my own. #PediatRx #TwitteRx #Booktwitter
Michele R. Wright, Ph... @WiseWright
140 Followers 186 Following Author, Speaker, Career Advice & Success Expert Michele R. Wright, Ph.D., is a top-performing national & international multiple award-winning corporate leader.
The Bonnell Foundatio... @RoadmapToCF
851 Followers 1K Following The Bonnell Foundation: Living with Cystic Fibrosis provides financial assistance, Educ. scholarships, & resources to navigate life with CF. #CFMomof2girls
smichel🦅 @smichelcfrd
104 Followers 1K Following RD in CF forever. QI coach. Designs vitamins for CF. Worked at CHOP now in CHS eating pizza at D’Al’s. Loving all the grands. Go Eagles
Chelsea 🫁🧂🍭 @chelsofthewest
1K Followers 1K Following cystic fibrosis. type 1 diabetes. anti-racist. feminist. white settler on unceded land. ✨recognizable by my cough✨ **NOT DEAD YET** she/her
naomi @SodiumDebt
46 Followers 119 Following
Medibanx @Medibanx
98 Followers 418 Following Empowering rare disease research through patient-centric longitudinal data aggregation and active patient participation.
Susie Millard @MillardSusie
294 Followers 1K Following Mom of 2 young men who are Eagle Scouts, Wife, Peds Lung Doc, MSU Associate Professor, Tweets are not Advice.
Zoey @_ZoeyJones_
659 Followers 2K Following Mother, Lecturer in Social Work, PhD researcher @edgehill. Campaigner for CF #cysticfibrosis #CF 🌹🌹🌹🌹🌹🌹🌹
Gustavo Nino, MD, MS,... @GustavoNino20
1K Followers 1K Following Professor of Pediatrics - Director of Sleep Medicine and Airway Biology Children's National Hospital, Washington D.C. Pediatric Pulmonologist
urbanplannerist 🏙�... @urbanplannerist
167 Followers 499 Following CF parent / urbanist / science & facts matter / rebel scum #saltingthevibes #blacklivesmatter #cysticfibrosis 🌹
UW Medicine @UWMedicine
35K Followers 1K Following A higher degree of healthcare in Washington state. Connecting patient care with a top-rated medical school and a research powerhouse.
University of Washing... @uwsph
14K Followers 1K Following #UWSPH | SPH denounces hate speech and the spread of false information. We are currently staying to bring truth and light to the conversation.
University of Washing... @UW
178K Followers 2K Following University of Washington students, faculty and staff believe in boundless opportunities. Do you dare to Be Boundless? At the UW, you can.
Seattle Children's Th... @SCTherapeutics
403 Followers 644 Following A nonprofit therapeutics development enterprise devoted to envisioning and testing next-generation cell and gene therapies for pediatric diseases. #CARTcells
Seattle Children's @seattlechildren
62K Followers 1K Following We're proud to be one of the top 10 pediatric hospitals & research centers in the US!
#UK CF campaigner Sha... @CFno1LeftBehind
1K Followers 1K Following 🇺🇦#Ukraine 🇬🇧#UK 💊 #Kaftrio 💙 #NHS #cysticFibrosis #genetherapy 🧬 Let’s find a “cure” for CF 💛 #noOneLeftBehind 💛💛@cftrust💛supporter
Haley Anders @HaleyAnders3
27 Followers 797 Following 🎚God comes 1st,💜#cysticfibrosis 🧬 DF508🫁N1303K,🌈#LGBT🌈, 🐶Dog Mom,💊Addiction Recovery, #wecanrecover #CFFoundation
Marrah Lachowicz-Scro... @LachowiczMarrah
1K Followers 3K Following Branch Chief, Lung Development and Pediatric Diseases Branch, Division of Lung Diseases, NHLBI. Any opinions expressed are my own not the views of my employer.
_laurenclayton_ @laurenclayton__
67 Followers 135 Following Respiratory physiologist 🫁 | PhD researcher @UoPSportScience - Exercise physiology in cystic fibrosis during the modulator era 👩🏼⚕️🫁🚴🏼♀️ @CFwarriors
Computer Bob Emmelkam... @cbtweeter
571 Followers 3K Following Community Servant, Philanthropist, On a lifelong mission to cure cystic fibrosis, Solar Powered & Tesla driven, Deliverer of Hope via latest CF research news
NOAACF @noaacf
115 Followers 30 Following The mission of the National Organization of African Americans with Cystic Fibrosis is to engage, educate & raise CF awareness in the African American community.
Gayle Pledger @gayle_pledger
573 Followers 624 Following 🫁 CF mum 🌍 Global campaigner 💊Trikafta4all 🏆’Big Issue’ Changemaker 2025. Founder@VertexSaveUs, ‘Right to Breathe,’ working@JustTreatment. Views my own.
Alyssa Perez, MD EdM @DrAP_MD
722 Followers 622 Following CF 🌹and Transplant ♻️ Pulmonologist 🫁 @UCSF I IM Residency APD @UCSF I @BrighamWomens IM I @UCSF PCCM I #MedEd #WomeninPulmonary | 🇵🇪 I Tweets = my own
Kim Novak - The Readi... @CFPharmD
778 Followers 790 Following CF Clinical Pharmacist & PGY2 Peds Pharm RPD @ Nationwide Children's Hospital. I ❤️books, food, & travel. Tweets solely my own. #PediatRx #TwitteRx #Booktwitter
Chelsea 🫁🧂🍭 @chelsofthewest
1K Followers 1K Following cystic fibrosis. type 1 diabetes. anti-racist. feminist. white settler on unceded land. ✨recognizable by my cough✨ **NOT DEAD YET** she/her
Kim McGarry @crystalthecat
19 Followers 113 Following
Zoey @_ZoeyJones_
659 Followers 2K Following Mother, Lecturer in Social Work, PhD researcher @edgehill. Campaigner for CF #cysticfibrosis #CF 🌹🌹🌹🌹🌹🌹🌹
Vertex Save Us @VertexSaveUs
894 Followers 676 Following Global campaign for equitable access to all Vertex CFTR modulator drugs which can extend & save the lives of people with cystic fibrosis (CF) wherever they live
Dr. Katie Larson Ode @LarsonOde
82 Followers 53 Following pediatric endocrinologist, interested in cystic fibrosis and gender affirming care for youth! my tweets are my own.
Miquéias @mlopes0811
116 Followers 359 Following Brother of a CF warrior (in memoriam) | MS, PhD | Drug Development and Precision Medicine | Respiratory Disease Research | 40 years.
Kristina Montemayor @KMonty_MD
2K Followers 735 Following Program Director @JHUPCCMFellows | Senior APD @OslerResidency | Longcope FFL 💪| Co-founder of @PulmPEEPs 🫁 | Proud 🌈 Latina
Vihaan Krishna @vihaan_cfindia
2K Followers 853 Following Vihaan's life with cystic fibrosis, Join us in spreading awareness, celebrating victories, and embracing the beauty in every moment 💜.Account Managed by Mom.
lavidasoñando @quererlavida
67 Followers 37 Following
Quynh Tran @QT_mph
325 Followers 911 Following 🙋🏻♀️ Here to listen, curate, & synthesize so people can manage their chronic illness by making informed decisions about their health. 🍎💊📈 #GiveMeMyData
urbanplannerist 🏙�... @urbanplannerist
167 Followers 499 Following CF parent / urbanist / science & facts matter / rebel scum #saltingthevibes #blacklivesmatter #cysticfibrosis 🌹
Chad Eddy @ceddy8
619 Followers 465 Following All or nothing. Club soda with lime; shaken, not stirred. 2022 @ChiMarathon finisher. Professional @EOSWorldwide Implementer. #AllIn🐯 #curecf💜
Benjamin Goldstein, M... @bdgmd
148 Followers 262 Following Pediatric pulmonologist, Clinical assistant professor of Pediatrics at @UToledo, husband, and #GirlDad. #FlyEaglesFly o|||||||o @DoctorsForBiden
Christy Sadreameli or... @PedLungDoc
974 Followers 2K Following Pediatric pulmonologist, sickle cell and rare lung disease researcher at Johns Hopkins. Advocate for children's respiratory health.
Jane Gross MD @JaneGrossMD
244 Followers 243 Following Pulmonologist @NJHealth. Physician scientist. Cystic fibrosis 🫁 NTM research. Mom. Army Vet. Advocate. 🏄♀️ 🏝️ aficionado. Views are own. (she/her)
Tanya Martinez @DrTanyaMartinez
146 Followers 328 Following mom3, pediatric pulmonologist, medical educator, proud Boricua 🇵🇷
Dorothy Curran, MD @DocDorothy
213 Followers 401 Following Pediatrician, Pgh raised ➡️ 🦫Undergrad ➡️ #MNnice ☃️️ med school/ residency ➡️ Boston Children’s Pulm 🫁 Fellow. Views mine: not a robot 🤖
Gustavo Nino, MD, MS,... @GustavoNino20
1K Followers 1K Following Professor of Pediatrics - Director of Sleep Medicine and Airway Biology Children's National Hospital, Washington D.C. Pediatric Pulmonologist
Kim Lu @KimLuMD
349 Followers 310 Following Pediatric pulmonologist | Asthma health |Tweets are not medical advice!
Mil Pensamientos @1KPensamientos
4K Followers 5K Following Con cada RT y follow haremos una donación a la Asociación Catalana de Fibrosis Quística @fqcatalana. #MilPensamientos. Gestionado por @agenciaimagina
Fundación FibrosisQu... @fibrosis_sv
178 Followers 342 Following Luchar por la esperanza de vida de los FQ en el salvador 🇸🇻
Estefania Rincón Fib... @ESTEFAR79
27 Followers 502 Following Fibrosis Quistica 💪 Sigueme en Instagram 👇
Fall Risk the Musical @FallRiskMusical
278 Followers 691 Following 2x CFF Impact Grant Winner • a new musical comedy about CF and transplant • we’re moving from script to stage! • DONATE! • based on a true story by @cystic4real
Todd Baillie @TBaillie2
923 Followers 3K Following Proud dad to sons at Georgia Tech & UNG plus another GT Grad. Clemson Grad, Janam/HID Revenue Chaser & Board Member of BreatheStrong for CF.
David Elin @Dave_Elin
535 Followers 2K Following #BlackLivesMatter Currently @CF_Foundation. @UVM & @NCState grad. @EnrollAmerica & @TownHallProject alum. @tucci_stanley doppelgänger (so I’m told). my account
CF Dental Study UCC @cf_ucc
111 Followers 181 Following Research Study into the Oral Health of Adults with Cystic Fibrosis
CF Exercise Network @CF_Exercise
588 Followers 321 Following Cystic Fibrosis exercise network. Bringing together therapists, technicians and staff with a passion for exercise in managing CF.
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
David Nannini @david_nannini
101 Followers 938 Following Interested in Medical Causes, especially Cystic Fibrosis.
Christine Noke @christine_noke
69 Followers 103 Following Founder and CEO of the Middle East CF Association, MECFA. On a mission to help improve the lives of people born with CF in the MENA region.
CFF Greater Palm Beac... @CFF_PalmBeach
264 Followers 413 Following The Greater Palm Beach Chapter is helping to advance @CF_Foundation’s mission to find a cure for every person living with cystic fibrosis.
Dr Owen Tomlinson @TomlinsonOwen
961 Followers 1K Following Lecturer & Programme Director @ExeterMed. 1/2 of @CF_Exercise. Exercise & activity expert in #respiratory disease. Cardiopulmonary exercise testing enthusiast.Trends for United States
You might like
