EveryLife Foundation @EveryLifeOrg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy. everylifefoundation.org Washington, DC Joined December 2009-
Tweets6K
-
Followers7K
-
Following3K
-
Likes5K
Baillie McGowan from @EveryLifeOrg and Mackenzie Abramson from @GlobalGenes during the RARE Drug Development Symposium in #Philadelphia. Live stream option available: go.globalgenes.org/44hbhSr
Alliance CEO @SuePeschin spoke at #WorldOrphanUSA on the patient impact of FDA's Accelerated Approval Program alongside experts from EveryLife Foundation, Johnson & Johnson, and The Center for Medicine in the Public Interest. #WorldOrphanUSA #rarediseases #rarediseasecommunity
Stay up-to-date on #NewbornScreening progress for #DMD and hear from experts @PMelmeyer, #MDA, Lauren Stanford, @ParentProjectMD, Annie Kennedy, @EveryLifeOrg, & Jill Castle, @LHF_EndDuchenne. Register today for the webinar on Friday, May 3 at 1pm ET: parentprojectmd-org.zoom.us/webinar/regist…
Today's #WorldOrphanUSA Panel Discussion: "We need to make sure we have the evidence collected early within the clinical trial ecosystem that then is available to payers to support access at the time of approval" - Annie Kennedy
The EveryLife's Jamie Sullivan and Julie Breneiser from @gorlin_alliance discuss "Patient-first innovation: FDA shifting rare diseases endpoints" #WorldOrphanUSA
Closing this morning's sessions at #WorldOrphanUSA discussing "Challenge and Opportunity with the Current Regulatory and Legislative Landscape in the US." The EveryLife's VP of Policy Jamie Sullivan, was joined by Rachel Smith, Mark Trusheim, Kinnari Patel and Peter Marks.
We're Hiring! Join our team in making a significant difference in the lives of over 30 million Americans affected by rare diseases. We're looking for: Vice President of Individual Giving, Events Manager and Communications Intern. Interested? Apply here: everylifefoundation.org/careers/
We are thrilled to have our very own Annie Kennedy share the stage with @US_FDA Commissioner Robert Califf at this year’s #WorldOrphanUSA discussing "Charting the path forward: Regulatory innovations and orphan drug designations in rare disease development"
Patient experience data has always been critical for FDA, we just didn’t know how to talk about it until recently. The science of #patientexperience data is coming along, particularly with #digitalhealth - @US_FDA R. Califf discussing reg innovations w/ @EveryLifeOrg A. Kennedy
8 days to go! Get excited for spectacular sessions, including the Keynote Fireside Chat: "Charting the path forward: Regulatory innovations and orphan drug designations in rare disease development", with... ⭐️ @US_FDA ⭐️ @EveryLifeOrg Register here: tinyurl.com/ytf27dud
Rare disease advocates looking for personalized coaching, guidance on setting advocacy goals, or assistance in forging connections with legislators- Don't miss this opportunity to enhance your efforts & make a lasting impact! To apply and learn more visit hubs.li/Q02sB7RQ0
Exciting opportunity from @EveryLifeOrg: The #RareIs Scholarship Fund! To learn more about the scholarship and how to apply visit everylifefoundation.org/rare-scholarsh…
Welcome Michael Pearlmutter, the new CEO of the EveryLife Foundation! 🎉 "As someone who has personally navigated the challenges of a rare blood disorder, I am deeply motivated to harness our collective power to make a significant impact" Read more: bit.ly/3PGvkUl
Fireside Chat highlight: "Patient-first innovation: FDA shifting rare diseases endpoints" with: Julie Breneiser, Executive Director, Gorlin Syndrome Alliance Jamie Sullivan, Senior Director of Public Policy, @EveryLifeOrg Register for #WorldOrphanUSA 👉 tinyurl.com/ytf27dud
We were honored to be at the @RareAdvocates @EveryLifeOrg #RareDisease Congressional briefing. Thank you for all your efforts to amplify the voices of patient communities, including #BarthSyndrome, and show that we are #NotTooRareToCare about! #RareDiseaseDay #RDW2024 #RareDC2024
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Rare Disease Day @rarediseaseday
44K 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 11K 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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Marni Cartelli @Purrfectly_Rare
3K Followers 2K Following Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Sarita Edwards @SaritaEdwards
1K Followers 813 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Becky Sansbury @AftrTheShock
2K Followers 2K Following Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Dr. Tracy Dixon-Salaz.. @TracyDixonSalaz
3K Followers 974 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
January Payne @januarypayne
1K Followers 2K Following Health communicator. Health equity advocate. Former health/medical journalist @washingtonpost @usnews. Dog mom. 🐶🐩🐕 Opinions are my own.
Ramiro Maldonado @RamMaldonado32
1K Followers 2K Following @Dukeeyecenter Retina specialist. Ophthalmic Geneticist. Clinician-Scientist. #ophthalmicgenetics #genetherapy #electrophysiology #translationalresearch
iPrevalence - UK Dise.. @iprevalence
43 Followers 483 Following 🏠 Home of useful disease stats 🏥 Powered by NHS prevalence data 👨⚕️ Supporting health & care with accurate data 📊 Find the dashboard on our website
C.J Elizabeth Stoppa @Stoppa5Stoppa
78 Followers 2K Following I don’t get revenge! I choose to eat , drink and be merry for tomorrow we die!!! I forgive everybody who ever hurt me ! I want my life filled with adventure
Secure By Design LLC. @KickonHaney
487 Followers 2K Following Solution Delivery excellence and performance in Data privacy/ security, AI/ML, Cyber & ZTA. #cybersportsmen #cyberbreakfast @ATARC
Melissa Hieger @HiegerM
73 Followers 309 Following Rare mom (DDX3X is my favorite gene), finance geek. CAIA. Aspiring venture philanthropist.
Jennifer Brown @jjunebrown
24K Followers 16K Following Indie author, public health advocate, genetics PhD. Creatively driven, scientifically inspired. Mom of 2 with the rare health condition PKU.
TurningPainIntoStreng.. @MichellesMemoir
253 Followers 460 Following Is pain a part of your life? Contact me! AUTHOR: Turning Pain Into Strength PODCASTER: https://t.co/Ns752TrvdI
Denville Partners @denvillepartner
398 Followers 2K Following #Executivesearch firm focused on supporting clients in Biotechnology, Pharmaceuticals, and industry related nonprofits.
Leo Ruiz @LeoRuiz71323443
0 Followers 7 Following
Cure HSPB8 Myopathy @curehspb8
6 Followers 47 Following The only patient advocacy group focused on HSPB8 Myopathy. On a mission to find treatments and cures, raise awareness and build a strong community.
Maged Hosney Alansary @MagedHosney_MD
24 Followers 228 Following
Representative Emerso.. @RepEmersonLevy
814 Followers 1K Following Oregon State Representative, June’s mom, Attorney and School Safety Champion #orpol #orleg
@ctxalliance @ctxalliance
8 Followers 11 Following Providing education, support, advocacy, and promoting research for CTX patients, their families, and medical professionals who treat and study this rare disease
ozzsb5ktzovjixq @2e5uhs163k
2 Followers 352 Following If you want to make friends, you can contact me anytime TG：https://t.co/tCmDetAQWb WS：https://t.co/5v7a5S3Ut3
Jackeline Micolta @jmicolta04
209 Followers 416 Following Comunicadora Social. #Drepanocitosis o Anemia de Células #Falciformes. Líder comunitaria. Comunicadora Comisión de la Verdad
Lauren Holder @laurencurehd
470 Followers 471 Following HD advocate, #rarediseases advocate, Producer of Help4HD Live, caregiver, mom, and much more!
Natalia Pozuelo @name__natalia
36 Followers 677 Following jcu’21 | Disability:IN NextGen Leader alumni | NBCUniversal + AAPD Tony Coelho Award Recipient | Adaptive Fashion Advocate | Disability & Rare Disease Advocate
Canadian Association .. @PorphyriaCanada
97 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
6ti3a5fb1rgumwj @de4ws1k3a
4 Followers 326 Following If you want to make friends, you can contact me anytime TG：https://t.co/I0JkVHrohW WS：https://t.co/sn5ixtfcjN
Amanda Monty @Amonty74
121 Followers 165 Following Boy mom, rare disease mom. Novel variant of YWHAZ/14-3-3ζ presenting as RASopathy-like; #2 pathologic variant of SCN8A LOF
Rob Hynds @robhynds
2K Followers 2K Following Scientist studying epithelial biology, stem cells and cancer @EpiCENTR_ICH. ⚽️ @BCFC 🏃🏻♂️ @LondonHeathside
Michelle Mayer @MichelleAMayer
11 Followers 174 Following
Christine Herlihy @crherlihy
695 Followers 5K Following PhD candidate @umdcs 👩🏻💻 | on the job market 🌿 ML/AI, RL | sequential decision-making | algorithmic fairness | knowledge representation & reasoning✨she/her
Waleed @WaleedAhmed7535
192 Followers 2K Following
Maria Bell @rmbell2008
11 Followers 85 Following Saved by Grace, seeking Truth, praising Him from whom all blessings flow.
Shanon Bramblette @Shanon0920
712 Followers 5K Following ?She/Her Bisexual & Bi-romantic TBI, DV, & GSW survivor in recovery. Single mom of 3 kids & 2 fur babies. Spoonie ♿️☮️☯️♋️ BLM Keto Low-carb Pro-Love Pro-Equal
Gaucher Community All.. @gaucheralliance
1 Followers 20 Following GCA is a non-profit organization supporting Gaucher patients and families through peer-to-peer aid, education, advocacy, resources, and networking.
Rachelle Nigro @nigro4dc
3K Followers 2K Following Civic Leader. The Go To Gal to Get Things Done. @311DCgov Super User. Part-time @dcdpr Park Ranger, & @ddotdc Project Manager. Plus I'm fun! IG: @nigro4dc
BRETON d'Origine impa.. @Romaxi45
109 Followers 939 Following
RareDiseaseDiversityC.. @rarediseasediv1
163 Followers 45 Following
Blood MedEd @bloodmeded
211 Followers 861 Following Here for sharing information & bringing awareness to 🩸 disorders &🩸diseases. RTs ≠ endorsements. Help us grow, follow us! #hemophilia #cancer #scd #dvt
Ankita Arora @Aror75326Arora
1 Followers 27 Following
NDUDIRI SIXTUS @NdudiriS
19 Followers 152 Following MALE NURSE-MIDWIFE, GRAPHICS DESIGNER, PHOTO/MOVIE EDITOR, CINEMATOGRAPHER, KEYBOARDIST.
Naomi Mittet @NaomiMittet
256 Followers 1K Following Board member of the Circadian Sleep Disorders Network. https://t.co/Obny1M5xHu newsletter editor + secretary. I'm a #DSPD mom with a #SightedNon24 child.
Linda Molina @LindaMolina_
65 Followers 941 Following I am a #medfrag mom. #payfamilycaregivers #hcbs #carecantwait #nursingshortage #A9034 #S8599
L. Marie Asad @LmarieAsad
3K Followers 4K Following Health Equity & Community Engagement Professional, NFP Board Leader. PBC Patient Advocate. M.A. Gerontology. Corporate Social Responsibility. 1913🔺️
Nobyseth @nobyseth85123
150 Followers 3K Following
Kelsey Bastian @bastiankelsey1
9 Followers 261 Following
Christine Lam, PhD @christineytlam
177 Followers 180 Following MD/MS student @dgsomucla. PhD @HopkinsMedicine. BA @UCBerkeley. #FirstGen #WomenInSTEM #PSCaware
nn @njpreston5700
19 Followers 92 Following
Alecia R @r_alecia82369
0 Followers 23 Following
Lindsey Viscarra @LindseyViscarra
11 Followers 279 Following State Policy Manager, Western Region at National Organization for Rare Disorders. Health Policy Expert. Thoughts are my own.
Laboratorios Larrasa @LacombeAng976
1 Followers 11 Following
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Rare Disease Day @rarediseaseday
44K 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 11K 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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Sarita Edwards @SaritaEdwards
1K Followers 813 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Dr. Tracy Dixon-Salaz.. @TracyDixonSalaz
3K Followers 974 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Seth Rotberg @Srotberg15
2K Followers 1K Following I help infuse the patient voice throughout drug development | #HuntingtonsDisease advocate | @Tedx Speaker | All views are my own
J&J Innovative Medici.. @JNJInnovMed
16K Followers 802 Following We innovate with purpose to lead where medicine is going. Channel run by Janssen Global Services LLC, NJ, USA. Our guidelines: https://t.co/aMAhBk9BBJ
Rachel Polansky @RPolanskyNews
4K Followers 2K Following Murrow & Emmy award-winning anchor for @NewsChannel9 weekdays from 4:30-7am | Previous: @ATLNewsFirst @wkyc @nbc2 | ✉[email protected]
Mayo Clinic @MayoClinic
2.0M Followers 2K Following An integrated clinical practice, education and research institution specializing in treating patients. Account maintained by @MayoClinic.
Sunny Brous @sunnystrongals
2K Followers 623 Following I have ALS but it does not have me. No apologies, no excuses, no regrets, just me.
Mike Graglia 🌻 @JMGraglia
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Kate Sheridan @sheridan_kate
5K Followers 2K Following Not active here. Freelance researcher, library student, former reporter at @statnews.
Damian Garde @damiangarde
17K Followers 2K Following @business reporter covering pharma / [email protected] / Signal/WhatsApp: 202-780-9154
Beth Steckler (she/he.. @purplemamabear
6K Followers 6K Following Focused on improving healthcare for patients & caregivers & medical professionals. Patient advocate, patient engagement. Believes kindness CAN change the world.
Virginie McNamar @VirginieMcNamar
34 Followers 79 Following Rare Disease advocate, Syngap1 mom, @CureSYNGAP1, Founder of Betterflye
The Innovation and Va.. @IVI_health
860 Followers 1K Following A non-profit research organization committed to advancing the science, practice, and use of health technology assessment in health care.
SWHR @SWHR
6K Followers 2K Following The Society for Women's Health Research (SWHR) is dedicated to improving women's health through science, policy, & education. Follow/RT does not = endorsement.
OrphanetJournal at BM.. @ojrarediseases
2K Followers 166 Following Orphanet Journal of Rare Diseases is fully open access & published by @BioMedCentral (part of @SpringerNature), on behalf of @INSERM.
Marshall Summar, M.D. @genedocrare
414 Followers 107 Following I have the pleasure of running the Rare Disease Institute at @ChildrensNatl . I work with Children and Adults with rare genetic conditions.
Michael Felker @DukeHFDoc
4K Followers 2K Following Heart failure cardiologist, clinical researcher, Professor of Medicine at Duke University. Dad, husband, sports fan. Bad guitar player. Tweets are my own.
Matthew Perrone @AP_FDAwriter
7K Followers 3K Following AP Health Writer covering the intersection the medicine, money and public policy. Sends tips, docs anonymously: https://t.co/C5bVjIYY3U
pharmalot @pharmalot
61K Followers 1K Following The latest news and views about the pharmaceutical industry, with @EdSilverman of @Statnews, ex-WSJ.. tips: [email protected]
StephanieEmmaPfeffer @StephEmmaPfeff
243 Followers 330 Following Writer/editor for PEOPLE and other outlets, fit mom, obsessive planner, runner (sometimes away from my kids), New Yorker trying to make the most of Boston.
Natalie Metzger @metzart
2K Followers 729 Following Producer. Writer. Director. Bookworm. Futurist. VP of Production & Development at Vanishing Angle
Ken Alltucker @kalltucker
3K Followers 904 Following Health reporter @usatoday, formerly @azcentral. Father of two girls, bassist, SF Bay Area native. Contact: [email protected], 703-854-5402
OsiyoTV @osiyo_tv
5K Followers 178 Following Osiyo, Voices of the Cherokee People is a regional Emmy award-winning docuseries featuring Cherokee people, places, history & culture.
Frankie Paris @fparises
2K Followers 1K Following data, visuals & words @upshotnyt. former @berkshireeagle, @npr, @wbur
Margot Sanger-Katz @sangerkatz
50K Followers 2K Following Covering health care metaphors at @nytimes @upshotnyt. Popcorn enthusiast. #wthealth
Mustang Times @mustangtimes
2K Followers 97 Following
Sydney Lupkin @slupkin
5K Followers 5K Following Correspondent at @NPRScience. Past: @KFFHealthNews, @VICENews, @MedPageToday, @ABC // DM for Signal
Selena Simmons-Duffin @selenasd
6K Followers 2K Following @NPR Health Policy Correspondent | Formerly @npratc @wamu885 @morningedition | Co-parent of two kids, painter | Send tips: [email protected]
NPR Science Desk @nprscience
259K Followers 271 Following Science news, commentary and conversation from NPR. Plus, a rad new podcast called #NPRShortWave! Subscribe now: https://t.co/lLI0fXx9Zk
Nurith Aizenman @aizenglobe
2K Followers 640 Following NPR Correspondent - I cover global health and international development
Rhitu Chatterjee @RhituC
4K Followers 2K Following Mental health correspondent @NPRHealth Previously at @NPRFood @pritheworld. RTs not endorsements.
CBS Sunday Morning �.. @CBSSunday
272K Followers 470 Following The award-winning morning news program, hosted by Jane Pauley.
Allison Aubrey @AubreyNPR
11K Followers 3K Following Washington based @NPR correspondent @CBSSunday contributor, Mom of 3. DMs are open, likes = bookmarks
Yuki Noguchi @Yukinoguchi
5K Followers 79 Following NPR Correspondent is my side gig. Driver/short-order cook is my primary.
Here & Now @hereandnow
39K Followers 9K Following We're NPR's midday news magazine, produced at WBUR. Find us at https://t.co/6dl84ttXmz, on our podcast Here & Now Anytime and every other place you read the news.
Ailsa Chang @ailsachang
37K Followers 490 Following Host of @NPR's All Things Considered, based at @NPRWest. Former @planetmoney & congressional correspondent. Lawyer in the lifetime before that. Proud Taiwanese.
NPR @NPR
8.7M Followers 63K Following NPR is an independent news organization committed to informing the public about the world around us. You can find us every other place you read the news.
Will Stone @WStoneReports
3K Followers 5K Following health and science news @NPR Tips? [email protected]
HHT Sverige @HhtSverige
89 Followers 189 Following 🩸 HHT Sverige: Stöd för HHT-drabbade och familjer. Vi representerar ca 2000 personer i Sverige, varav 90% är odiagnostiserade. #ÖkaAntaletDiagnos 💪🇸🇪
Anastassia Gliadkovsk.. @gliadkovskaya
2K Followers 718 Following Covering health equity @FierceHealth. Ex Stabile @ColumbiaJourn @PulitzerCenter @Forbes @THECITYNY. 📥 [email protected]
Heather Landi @HeatherLandi
6K Followers 5K Following NYC-based journalist, Executive Editor @FierceHealth. Send tips to [email protected]. Also big fan of very good dogs, crime thriller fiction, margaritas
Paige Minemyer @pminemyer
1K Followers 505 Following Health insurance reporter and resident k-pop expert at @FierceHealth. @penn_state forever. Usually with my cat, Jon Snow. Send tips to [email protected].
Dave Muoio @dave_muoio
1K Followers 244 Following Staff Writer at @FierceHealth. Tweets are my own, but you can find my stories and what I'm reading here.
Ayla Ellison @AylaEllison
3K Followers 1K Following Editor-in-Chief, Healthcare & Life Sciences, at Questex @FierceBiotech @FierceHealth @FiercePharma @FierceMedtech
Punchbowl News @PunchbowlNews
140K Followers 72 Following Subscribe at https://t.co/rE466HFASP Power. People. Politics. #punchbowlnews
Jeffrey Brainard @JeffreyBrainard
462 Followers 45 Following Associate news editor, Science magazine. Edits In Brief section, covers scientific publishing, peer review, other topics. Go Nats and Ephs!
Joseph Choi 최명훈 @JosefChoi
761 Followers 922 Following Reporting on health care @thehill | Multimedia Journalist | Mastodon: @[email protected] Interned: The Daily News Journal / The Tennessean / WKRN News-2
Benjamin Ryan @benryanwriter
29K Followers 3K Following 🔬Health & science reporter | Contributor to: @NYTimes @NBCNews @Guardian @NewYorkSun | Others: @WashingtonPost @TheAtlantic | Cancer Survivor | Columbia grad
#WorldOrphanUSA: After a 25-year journey advancing basic, translational & clinical science, the Friedreich ataxia community saw a drug approved by the @US_FDA last year to slow down the course of the disease. Read more: rarediseaseadvisor.com/reports/after-… #RDAatWODC @CureFA_org…
Alliance CEO @SuePeschin spoke at #WorldOrphanUSA on the patient impact of FDA's Accelerated Approval Program alongside experts from EveryLife Foundation, Johnson & Johnson, and The Center for Medicine in the Public Interest. #WorldOrphanUSA #rarediseases #rarediseasecommunity
Stay up-to-date on #NewbornScreening progress for #DMD and hear from experts @PMelmeyer, #MDA, Lauren Stanford, @ParentProjectMD, Annie Kennedy, @EveryLifeOrg, & Jill Castle, @LHF_EndDuchenne. Register today for the webinar on Friday, May 3 at 1pm ET: parentprojectmd-org.zoom.us/webinar/regist…
While many challenges exist, panelists at @Parexel, @US_FDA, @EveryLifeOrg, @RocketPharma, and NEWDIGS at the @TuftsMedicalCtr talked about the opportunity ahead where rare diseases offer a proving ground for gene therapies. #WorldOrphanUSA
Join PPMD, @MDAorg, @EveryLifeOrg, and @LHF_EndDuchenne for a collaborative webinar on Friday, May 3rd at 1pm ET updating the community on the latest developments in #newbornscreening for #Duchenne. Register now and submit questions in advance: parentprojectmd.org/events/webinar…
Patient experience data has always been critical for FDA, we just didn’t know how to talk about it until recently. The science of #patientexperience data is coming along, particularly with #digitalhealth - @US_FDA R. Califf discussing reg innovations w/ @EveryLifeOrg A. Kennedy
Scholarship opportunity from @EveryLifeOrg! Apply by April 22! 🎓💸 ➡️everylifefoundation.org/rare-scholarsh… #pheo #para @RareDiseases @LACNETS @RonnyAllan1 @NANETS1 @CureNETs @CarcinoidNETs @VHLAlliance @AMENDInfoUSA @accCURE @amensupport @RareBeacon
The #RAREis Scholarship Fund helps adults of all ages with rare diseases pursue their dreams thru education. This fund will award up to 88 $5,000 scholarships for the Fall 2024 semester. 🎓💸 Application open thru April 22: ➡️rarescholarship.org @EveryLifeOrg
8 days to go! Get excited for spectacular sessions, including the Keynote Fireside Chat: "Charting the path forward: Regulatory innovations and orphan drug designations in rare disease development", with... ⭐️ @US_FDA ⭐️ @EveryLifeOrg Register here: tinyurl.com/ytf27dud
This year, the #RAREis Scholarship Fund, powered by our friends @EveryLifeOrg and @RAREis___, will be awarding $5,000 scholarships to 88 adults (17+) living with a rare disease. Applications are open until April 22 at rarescholarship.org. Learn more buff.ly/3QbM7Pp
This year, the #RAREis Scholarship Fund, powered by our friends @EveryLifeOrg and @RAREis___, will be awarding $5,000 scholarships to 88 adults (17+) living with a rare disease. Applications are open until April 22 at rarescholarship.org. Learn more buff.ly/3QbM7Pp
With just 3️⃣ weeks to go... the countdown to #WorldOrphanUSA is on! Get excited to meet hundreds of rare disease stakeholders and professionals, like our Media Partner 𝗡𝗔𝗩𝗟𝗜𝗡 𝗗𝗮𝗶𝗹𝘆! Register today to join them: tinyurl.com/ytf27dud
Exciting opportunity from @EveryLifeOrg: The #RareIs Scholarship Fund! To learn more about the scholarship and how to apply visit everylifefoundation.org/rare-scholarsh…
It's time for #RareDC2024! Hundreds of advocates, including those living with MG, are coming together to share their stories with Congress this week. Thanks to @EveryLifeOrg for making this possible! everylifefoundation.org/rare-advocates… #RareDiseaseWeek2024 #AdvocacyInAction
Our first full day at #RareDC2024 Preparing to represent the #cystinosis community tomorrow on Capitol Hill @EveryLifeOrg
Turning the page. New chapters, hey there Michael!! 🦓 #WeARE #EveryVoiceMatters #RareAdvocacy #PatientCentric
Welcome Michael Pearlmutter, the new CEO of the EveryLife Foundation! 🎉 "As someone who has personally navigated the challenges of a rare blood disorder, I am deeply motivated to harness our collective power to make a significant impact" Read more: bit.ly/3PGvkUl
@EveryLifeOrg Welcomes Michael Pearlmutter as CEO prn.to/3TVoUmz
Check out this year's recap video of #RareDC2024: youtube.com/watch?v=x-37oQ… Thank you to @RareAdvocates & @EveryLifeOrg as well as all the #amyloidosis patient representatives who came with us and made this year's Rare Disease Week a great experience.
Last chance to join FSR on March 21, 2024 at 2pm CST for a discussion led by an expert panel on the critical role of diversity in advancing treatment options through clinical trials! Register: loom.ly/4MYxWPU
Rare Disease Week 2024: Policy, Community, Advocacy bit.ly/49LDQcw #RareDC2024 #RareDiseaseWeek #RareDisease #RareDiseaseDay @RareAdvocates @EveryLifeOrg
Trends for United States
You might like
