Jennifer Huron @JenniferHuron
Reader, writer, communications, strategy. Passionate about advocacy @rarediseases. Sports enthusiast. Forget cats, the internet was made for corgis. rarediseases.org/nord40/ Joined June 2009-
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On behalf of children with #RareDiseases and their caregivers, NORD strongly urges Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program before the September 30, 2024 deadline. Learn more: bit.ly/4bCldZU
#RareDiseaseDay is just 10 days away! 🦓 Looking for ways to #ShowYourStripes in your community? Download our playbooks for tips and tools on how to stripe out your school, work, and neighborhood: bit.ly/48lCgfX
In honor of #RareDiseaseDay coming up, we invite you to join us on February 8 for a virtual discussion of strategies to raise awareness for #RareDiseases and advocate in your community! Register for this Community Conversation: bit.ly/3SzoLEW
“I am writing a book because there are so many incredible stories that need to be told, and so many people who need to hear (or read) them.” @kaleidoscoperar wants to hear from YOU! Details on how to participate in this exciting, powerful project: bit.ly/kaleidoscopera….
If you’re in Boston on 10/28, come on out and support research @WendyKChung @BostonChildrens and see hero first responders take the ice to play for our hero #RareDisease kids! kif1a.org/get-involved/e…
If you’re in Boston on 10/28, come on out and support research @WendyKChung @BostonChildrens and see hero first responders take the ice to play for our hero #RareDisease kids! kif1a.org/get-involved/e…
More than half of U.S. states now have Rare Disease Advisory Councils to advance the needs of their #RareDisease communities. NORD is proud to host representatives from around the country at our special #RDAC meeting before tomorrow's #NORDSummit!
Calling all #RareDisease patients, caregivers, and allies in #Michigan! A majority of states have now created Rare Disease Advisory Councils - and it's Michigan's turn to join them. Make your support known. ⬇️
Calling all #RareDisease patients, caregivers, and allies in #Michigan! A majority of states have now created Rare Disease Advisory Councils - and it's Michigan's turn to join them. Make your support known. ⬇️
Unless Congress acts, the IRA threatens to unravel one of America's greatest medical and public policy success stories. trib.al/sqKB74l
13 years ago this month, my son was diagnosed with brain cancer. I promised him that I would do everything I could to help kids with #ChildhoodCancer. It’s the only thing he asked us to do. Not to help him, but to help others. I would be grateful for a follow or a RT to spread…
For #NationalPatientAdvocacyDay, read about Judy, a rare disease advocate in Hawaii with #IgANephropathy. Judy's testimony before the #Hawaii legislature helped pass a law making it easier for residents with #RareDiseases to access out-of-state care: bit.ly/47C85BU
“My hope is that we will have treatments for every rare disease community. That hope is alive because of the Orphan Drug Act” -Kyle Bryant, Friedreich’s ataxia patient
2022 marked several significant policy victories for people living with rare diseases, thanks to our advocates' tireless dedication. As we get ready for an advocacy-packed 2023, let’s revisit some highlights of what we accomplished together last year: bit.ly/3GAZKC7.
On today's 40th anniversary of the #OrphanDrugAct, NORD is calling on all community members to come together, just as we did 40 years ago, to accelerate the next era of progress. We have the power to shape the future. Together, let's #ReimagineRare: bit.ly/3VKED5B
Have a resolution to get moving & want to make it more meaningful? Join a walk, run, wheelchair race, & fundraise for NORD through the Running for Rare…Anywhere program. Apply & NORD staff will help you start moving to support those with #RareDiseases. bit.ly/3VDPmia
Congress has some important unfinished business to complete before the end of the year for its constituents with #RareDiseases. NORD President and CEO Peter Saltonstall explains what's at stake in this new commentary in @TheWellNews bit.ly/3hrS3p1
Several celebs recently revealed they're living w #RareDisease. So many conditions, so few treatments. Grateful 4 everyone who raises awareness. As #OrphanDrugAct turns 40 next month, evidence we need this lifesaving law now more than ever. @RareDiseases usatoday.com/story/entertai…
Thank you for coming and for all you do--so enjoyed your research poster and presentation! #PFDD #NORDSummit
Thank you for coming and for all you do--so enjoyed your research poster and presentation! #PFDD #NORDSummit
Tonight, thanks to John Costello and his amazing team, I played my synthetic voice for my family for the first time. My daughters asked it was. My wife replied, that was the way daddy’s voice used to sound. I just listened and held back tears. Good night moon.
So true - “shaking healthcare systems” - thank you for coming and for all you do! 🧡🧡🧡🦓🦓🦓💪💪💪 #nordsummit #rarediseases
So true - “shaking healthcare systems” - thank you for coming and for all you do! 🧡🧡🧡🦓🦓🦓💪💪💪 #nordsummit #rarediseases
Only 9am & already we’ve heard from @FDACommissioner about new programs, grants & key initiatives at FDA (#biomarkers, #RWE, #data, #naturalhistory); learned from patient & caregiver keynote speakers; and sung happy bday to @raredisease staff in front of 700+ ppl! #NORDSummit
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 🦓
Sarita Edwards @SaritaEdwards
1K Followers 814 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
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
Ryan Rodarmer, MS �.. @3rsCardioGC
839 Followers 942 Following Director @VEDSMovement, @MarfanFdn | Veteran Cardio GC | Type A #AorticDissection Survivor due to #HTAD | Opinions are my own. #AortaEd
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
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.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Abby Turnwald (she/he.. @PedsGCAbby
926 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Sara Goldberg @SaraGoldbe25245
113 Followers 3K Following
Salesha @Salesha158969
48 Followers 2K Following
us_Delilah_ @UDelilah23095
28 Followers 2K Following
Tosithe @tosithe16797
51 Followers 2K Following
Emily Faber @Emilybp_Faber
7 Followers 458 Following Gathered on the site of girls from all US states 😈 Ready for a 1 on 1 meeting See nude photos before a date! Watching this https://t.co/hJ83T4N6aq
us_Autumn_ @UsAutumn47482
26 Followers 2K Following
us_Elizabeth_ @usElizabet42278
24 Followers 2K Following
us_Isabella_ @us_isabell20098
27 Followers 2K Following
Celeste Taylor @CelesteTay85372
130 Followers 3K Following
Leslie Jacobs @JacobsLesl72732
99 Followers 3K Following
Rosa Cruz @RosaCruz1146719
75 Followers 3K Following
Izaiah LynnBrenden @IzaiahLynn92991
128 Followers 3K Following
Amanda White @AmandaWhit77189
138 Followers 3K Following
Johnson Thomas @JohnsonTho36832
154 Followers 722 Following Not Everyone Like Me, But Not Everyone Matter..
CARRA @carrainc
978 Followers 819 Following We conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases. A world free of limitations from pediatric rheumatic diseases.
Michelle Zimmerman @mldzimmerman
435 Followers 764 Following Associate Director, Regional Media Advocacy @ACSCAN. Proud Mom & Wife. Yogi. @MuskingumUniv & @UAkronBliss alum. Opinions = my own
Rachel @rachel18clement
191 Followers 3K Following
Keys To My Wishes @KeysToMyWishes
5K Followers 672 Following 🗝️Empower Your Peace of Mind with KeysToMyWishes! Experience peace of mind and stay connected with us. Join the KeysToMyWishes community today.
Mary @mary_stewart54
177 Followers 3K Following
Rob Goldstein @GoldstroRob
193 Followers 433 Following I can walk, talk and chew gum at the same time. I am passionate about biotech, healthcare and patient advocacy. Tweets represent my own opinon not my employer's
Dana Rowland @dana_rmsks
990 Followers 3K Following Musculoskeletal/Abd/OB-GYN Ultrasound @UMichRadiology💛💙〽️ wife and mom #MSKUS Views are my own. Be kind ❤️ NO DM’s #HCWvsHunger Living with Addisons disease🦋
Sabrina Mccall @mccall_sab96731
129 Followers 3K Following
atrevino @atrevino
870 Followers 307 Following Father of 3. Patient Advocate. Author of Andy & Sofia.
Reba @reba_dawson32
185 Followers 3K Following
Life's a Polyp @LifesaPolyp
736 Followers 1K Following Rare Disease Advocate: (FAP) Familial Adenomatous Polyposis, Short Bowel Syndrome. Children’s Book Author
Marissa Brown @Marissa4CAN
499 Followers 806 Following At American Cancer Society Cancer Action Network. Advocate. Avid reader, lover of long walks. Soccer fan. Mom, sister, friend. She/her.
Amanda Haddock 🧬 @AmandaHaddock
8K Followers 6K Following White House Champion of Change for Precision Medicine 🧬, Pres of @BeADragonMaster 🐲 Mom to 4: 3 on Earth, 1 in Heaven because of brain cancer.
Allison Herrity @AllisonHerrity
104 Followers 205 Following Senior Policy Analyst @rarediseases, 2x alum @gwpublichealth. Fan of crafts, my cats & the washington commanders. Opinions are my own. (she/her)
Shari @dennis_shari14
144 Followers 3K Following
Judy @chang26judy
186 Followers 3K Following
Nancy @nancy_fant_
240 Followers 3K Following
Nick Kirchhof @NKirch15
816 Followers 424 Following -Head Men's Soccer Coach at Metropolitan State University of Denver -3x NCAA National Champion 05, 15, 16
Perlara @PerlaraPBC
5K Followers 3K Following https://t.co/fyNyv0FS57 The first biotech public benefit corporation est. 2014. Building the YC for Rare. Co-owner @epalrestat
❤️ Memecoin @CynthiaJuliet20
17 Followers 118 Following It has finally risen in priceAnyway, please take good care of your risk management
Cure for Vineeth @curevineeth
178 Followers 644 Following Fighting Hunter syndrome(MPS II). Champion. Gene therapy cure seeker #curemps2 #endhuntersyndrome #RareDisease #EveryLifeIsPrecious #MPS2 #HunterSyndrome #rare
Nika C. Beamon @NikaBeamon
368 Followers 433 Following Motivational Speaker, Author: Misdiagnosed: The Search For Dr. House, Author: I Didn't Work This Hard Just to Get Married, journalist, chronic illness blogger
beth Vanstone @bethdenniss
468 Followers 246 Following Podcast Producer @TheBonnellFoundation Liaison @UofT Pharmacology Dep Former Director @CFGetLoud , Advocate for Cystic Fibrosis and the rare disease community.
Cripples Unite @UniteCrips
15 Followers 397 Following
KerriEngebrecht @kerri0413
280 Followers 777 Following Advocate for adrenal insufficiency, Addison's Disease, Pediatric COPD, FTD, PNES, FND, & metal health. #igavebirtomyheroes Wife to the 1 who supports my dreams!
HAUSER @Hauserofficiall
84 Followers 525 Following Music/Band/ Magician of the Cello🎻 https://t.co/IcbGmBp4Ut
Daphne Jones @DaphneJ81025392
117 Followers 350 Following Educator; Light-hearted; usually don't take everything seriously; kindness and respect mean everything...
Katie Gillick @KatieGillick
8 Followers 129 Following
Jennifer Chwalik Nagy @nagy_jennifer17
338 Followers 3K Following Healthcare Professional, Cervical cancer survivor, daughter of breast cancer survivor, aunt of 2 childhood cancer survivors, Health Advocate!
Tamika Felder @tamikafelder
3K Followers 2K Following Speaker| #Cervivor| Patient Advocate |Filmmaker | Founded @iamcervivor | Community Builder| |Author |Carolina Girl | ΔΣΘ https://t.co/7OW8o9edbH
Meg Hager (she/her) @MegaRedd
1K Followers 1K Following Genetic Counselor. MPH. Runner. Knitter. True crime enthusiast. Beagle lover. All views expressed are my own.
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 🦓
Sarita Edwards @SaritaEdwards
1K Followers 814 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
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.
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
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
NCATS @ncats_nih_gov
16K Followers 702 Following Official account of @NIH's National Center for Advancing Translational Sciences. Privacy Policy: https://t.co/f5qzfKqqaR engagement ≠ endorsement
Ryan Rodarmer, MS �.. @3rsCardioGC
839 Followers 942 Following Director @VEDSMovement, @MarfanFdn | Veteran Cardio GC | Type A #AorticDissection Survivor due to #HTAD | Opinions are my own. #AortaEd
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
National Human Genome.. @genome_gov
81K Followers 446 Following Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. https://t.co/4hdQRFkFNU
Sophie Vershbow @svershbow
52K Followers 9K Following Writer: @nymag @esquire @nytimes, etc. Head of Influencer Mkt: @eventbrite. Formerly in publishing. Mostly tweeting dogs & books. She/her. Opinions my own.
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.
Kelsie McVeety🇵�.. @Kelsie_McVeety
1K Followers 2K Following Cancer genetic counselor | Queer | Disabled | Anti-racist, gender-inclusive healthcare | All views expressed are my own. she/they 🌹🏳️🌈
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Dena Winchester 🧬�.. @DenaSWinchester
481 Followers 342 Following Licensed and certified Genetic Counselor specializing in bleeding disorders at Emory University. Passionate about rare disease and patient advocacy.
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Margot Sanger-Katz @sangerkatz
50K Followers 2K Following Covering health care metaphors at @nytimes @upshotnyt. Popcorn enthusiast. #wthealth
Sarah Kliff @sarahkliff
142K Followers 1K Following Investigations and health policy for the @nytimes. I like reading your medical bills.
The Upshot @UpshotNYT
233K Followers 306 Following Analytical journalism in words and graphics from The New York Times. Our newsletter: https://t.co/DclvAjp9cj
FierceHealthcare @FierceHealth
59K Followers 3K Following The healthcare industry's trusted source for need-to-know news & analysis. Delivering news, revealing insights straight to your inbox.
HealthLeaders @HealthLeaders
66K Followers 4K Following The healthcare industry’s leading source for news, intelligence, and strategy for senior executives. https://t.co/1yAGCzqVBF
Modern Healthcare @modrnhealthcr
150K Followers 420 Following Award-winning healthcare business news, research and opinion | https://t.co/IqTQOt0NUe (RTs are not endorsements)
American Academy of C.. @AACAP
19K Followers 5K Following AACAP is the leading national medical association dedicated to treating families affected by childhood and adolescent mental illnesses. Follow/RT ≠ endorsement.
Children's National H.. @ChildrensNatl
38K Followers 4K Following We don’t want kids to just grow up, we want them to #GROWUPSTRONGER. Official feed for Children's National Hospital.
The Leukemia & Lympho.. @LLSAdvocacy
4K Followers 1K Following @LLSAdvocacy works to drive policies that accelerate the development of new cancer treatments & break down the barriers to care that patients often encounter.
ACS CAN Connecticut @ACSCANCT
362 Followers 422 Following The American Cancer Society Cancer Action Network (ACS CAN), is the nation's leading advocacy organization dedicated to defeating cancer. Serving Connecticut.
Christina Jewett @By_CJewett
9K Followers 8K Following New York Times reporter covering all things F.D.A. with an eye on intersection of malady & money. Tips? DMs open & ask for Signal.
Scrip, Citeline Comme.. @PharmaScrip
22K Followers 2K Following Scrip goes beyond the headlines to deliver insight & analysis on drug discovery, development and product life cycle value chain.
BioCentury @BioCentury
16K Followers 2K Following The leading voice for decision-makers throughout the global biopharma ecosystem. Follow us on LinkedIn for exclusive insights & analysis: https://t.co/V33Z1gfUfZ
John Carroll @JohnCendpts
71K Followers 94 Following Working journalist for 46 years, invented FierceBiotech, founded Endpoints News now majority-@FT owned. 201,000 subscribers. These are personal opinions.
The Information @theinformation
99K Followers 697 Following The leading publication high-powered tech executives and founders read daily.
SXSW @sxsw
631K Followers 11K Following Helping creative people share ideas and achieve their goals since 1987. SXSW 2025: March 7–15 | Austin, TX
Sportico @Sportico
44K Followers 1K Following Sportico is a high quality digital content company providing sports industry breaking news, data, information, strategies, leadership and insight.
The Patient Story @Patient_Story
895 Followers 533 Following We #HumanizeCancer - You are not alone ❤️. Your voice matters, share your story! ✍️ [email protected] Founded by #cancer #survivor @stephchuang 🙋🏻
ACSCAN Indiana @ACSCANIN
542 Followers 534 Following We’re the @ACSCAN Indiana team working on #cancer advocacy issues. Share your cancer story: https://t.co/AWacDdwWWs…
Minnesota Rare Diseas.. @MNRDAC
20 Followers 27 Following
Michelle Zimmerman @mldzimmerman
435 Followers 764 Following Associate Director, Regional Media Advocacy @ACSCAN. Proud Mom & Wife. Yogi. @MuskingumUniv & @UAkronBliss alum. Opinions = my own
Mark Fleury @ME_Fleury
828 Followers 1K Following Principal, Policy Development-Emerging Science ACS CAN: Cancer, Clinical Trials, FDA, Personalized Med. Views are my own and not those of ACS or ACS CAN
David Benson @davidwbenson
425 Followers 664 Following Senior State and Local Campaigns Manager @ACSCAN. @AugustanaSD alum. Tweets are my own.
Scienceline @scienceline
16K Followers 1K Following The shortest distance between you and science. Brought to you by the science, health and environmental reporting students at @nyu_journalism
Sanofi @sanofi
152K Followers 224 Following We chase the miracles of science to improve people’s lives. Interactions with this account must comply with the Terms: https://t.co/mXmuqtkJaU
Duke-Margolis @DukeMargolis
4K Followers 606 Following Improving health, health equity, and the value of health care by developing and implementing evidence-based policy solutions locally, nationally, and globally.
Families USA @FamiliesUSA
20K Followers 3K Following Our vision is a nation where the best health and health care are equally accessible and affordable to all.
National Colorectal C.. @NCCRTnews
2K Followers 690 Following A national coalition established by @AmericanCancer dedicated to reducing the incidence of and mortality from colorectal cancer in the U.S. #80inEveryCommunity
Brenda Goodman @ReporterGoodman
3K Followers 3K Following Senior Writer, CNN Health Major science geek. find me on the other one: @bkdgoodman idea? Tip? My DMs are open. Encrypted: [email protected]
Dr. Karen Winkfield @DrWinkfield
5K Followers 900 Following MD-PhD; Radiation oncologist with a passion for health equity; addressing health literacy; loving patients & advocates; empowering individuals & communities.
Ellen DaSilva @ellenjdasilva
8K Followers 993 Following You say you want a revolution? Well you know, we all want to change the world. now: Founder @joinsummer, scout @sequoia. Ex-@wearehims @HarvardHBS @twitter
Lauren Gardner @Gardner_LM
6K Followers 2K Following FDA politics & policy reporter @POLITICO. Honorary 🇨🇦. 26.2 x5. It's pronounced "wooder." RTs ≠ ;) DM for Signal/WhatsApp. [email protected]
Luke Zarzecki @lzarzecki1
681 Followers 658 Following FDA & drug pricing reporter for @InHealthPolicy , formerly @ColoradoNewsCCM
Katherine Ellen Foley.. @katherineefoley
8K Followers 2K Following director of media for @smokefreefnd | katherine dot foley at smokefreeworld dot org | my views | previously @politico and @qz | tell your cats I say 'pspsps'
CARRA @carrainc
978 Followers 819 Following We conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases. A world free of limitations from pediatric rheumatic diseases.
atrevino @atrevino
870 Followers 307 Following Father of 3. Patient Advocate. Author of Andy & Sofia.
Washington University.. @WashURareCare
67 Followers 69 Following NORD Rare Disease Center of Excellence | We provide clinical diagnosis, care for those with rare diseases and are recognized as a leader in rare diseases.
The Yale Review @yalereview
12K Followers 839 Following New perspectives, enduring writing. Join a conversation 200 years in the making.
Jon Cohen @sciencecohen
41K Followers 2K Following Science magazine staff writer on infectious diseases, outbreaks, immunology, vaccines, global health, genomics, CRISPR, surfing. Views mine. @[email protected]
Lei Lei Wu @leilei_wuu
1K Followers 974 Following reporting on drugs and biotechs @endpts • email me: [email protected] • ✌️
Meghan O'Rourke @meghanor
23K Followers 2K Following Author of NY Times Bestseller THE INVISIBLE KINGDOM: REIMAGINING CHRONIC ILLNESS, a finalist for the National Book Awards. Editor, The Yale Review. @NYUCWP.
Megan Molteni @MeganMolteni
8K Followers 2K Following science writer @statnews | formerly @WIRED | she/her | genetic privacy & Crispr tips to [email protected] | DM for signal
Stefan Moore 🎗 @2StefanMoore
29K Followers 3K Following Chairman & CEO of Cancer Response Team (@NonProfit4Kids)🎗• Helping #ChildhoodCancer patients get supportive cancer treatments • No DM’s ⛔️ • Tweets are my own.
Life's a Polyp @LifesaPolyp
736 Followers 1K Following Rare Disease Advocate: (FAP) Familial Adenomatous Polyposis, Short Bowel Syndrome. Children’s Book Author
foregenomics @foregenomics
41 Followers 96 Following FORESITE 360 is the most comprehensive genetic test designed for healthy newborns, infants, and children to understand and manage their risk of disease.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
Bonny Morris, PhD @BonnyMorrisPhD
126 Followers 200 Following Behavioral scientist, Oncology nurse, Challenging the status quo to advance cancer care delivery, #patientnavigation #digitalhealth #ruralcancerdisparities
Jennifer Greenwald @jgreenwald23
191 Followers 388 Following Georgia girl, working mom, VP Mission Strategy & Operations @ American Cancer Society. Tweets my own.
May is Brain Cancer Awareness Month. In memory of my daughter who died from infant brain cancer, please support Dana-Farber’s @TeamBeansFund. Pharma overlooks childhood cancer due its lack of profitability, so it’s up to bereaved parents to fill the gap. profile.pmc.org/AK0302
@hospitals4kids #RareDisease patients, half of whom are kids, frequently seek care outside their home state. Often, there are only a handful of providers in the U.S. with the knowledge to effectively treat their condition. The #AKAC would increase access to timely care for those most in need.
@hospitals4kids We're the arm of @LLSusa working to drive policies to accelerate the development of new cancer treatments & break down barriers to care that patients often encounter. One of our key priorities is ensuring access to treatments for pediatric & adolescent/young adult patients. #AKAC
🕚 Only 1 HOUR left until our Accelerating Kids Access to Care Act Twitter Chat at 12noon ET! Together, we can ensure that every child has timely access to the care they need, regardless of where they live! #AKAC
How we feel about hosting the #AKAC Twitter Chat to raise awareness to the importance of enacting Accelerating Kids Access to Act to ensure timely access to care for children with medical complexities:
Welcome to the Accelerating Kids Access to Care Act Twitter Chat!!!! #AKAC
On behalf of children with #RareDiseases and their caregivers, NORD strongly urges Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program before the September 30, 2024 deadline. Learn more: bit.ly/4bCldZU
#RareDiseaseDay is just 10 days away! 🦓 Looking for ways to #ShowYourStripes in your community? Download our playbooks for tips and tools on how to stripe out your school, work, and neighborhood: bit.ly/48lCgfX
In honor of #RareDiseaseDay coming up, we invite you to join us on February 8 for a virtual discussion of strategies to raise awareness for #RareDiseases and advocate in your community! Register for this Community Conversation: bit.ly/3SzoLEW
#raredisease families, looking back, what is one thing your wish your provider would’ve said to you the day you received your or your child’s diagnosis? #genechat #genetic
@PedsGCAbby Get you and your child into counseling to process it all
@PedsGCAbby I thought I needed to know everything about the disease, as if I were a Dr. It was overwhelming. When a nurse finally said you care for your child as a mom and bring her to us when she’s sick. So I wish I had heard that upon diagnosis.
@PedsGCAbby I was just so happy to have a correct diagnosis at last! It took 38 years...
#RareDisease advocate Kerry Wong invites rare patients to share their story for her upcoming book! Proceeds benefit NORD. Interested individuals can send their stories or questions to [email protected] by TOMORROW, November 17. Learn more here: bit.ly/3ElOsAZ
My mom passed away from brain cancer when I was in college and one of the most important lessons she taught me was in the midst of tough times, don’t just wait for a silver lining – create it. Whether it’s battling a rare disease or facing life’s hardest challenges, it’s about…
Today, I testified in front of the Senate Health Policy Committee in favor of my bill to creat a Rare Disease Advisory Council in Michigan! #RareDisease #RareDiseases #mileg
Happening now: Representative @JasonMorganMI testifies in support of HB 4167, a bill he introduced to create a Rare Disease Advisory Council in Michigan. Thank you, Rep. Morgan, for sharing your experience as a rare disease patient and introducing this important legislation!
The 2023 #NORDSummit officially kicks off tomorrow! Today, we're hosting pre-Summit meetings with our NORD #RareDisease Centers of Excellence, Member organizations, Rare Disease Advisory Council (#RDAC) members, & #StudentsForRare. Enjoy our Welcome Reception tonight at 5:30pm!
The 2023 NORD Breakthrough Summit is finally here! We are thrilled to welcome over 800 individuals to Washington, DC for several days of collaborative learning about today's most critical #RareDisease topics. Follow the hashtag #NORDSummit for highlights!
NEW: At today's #NORDSummit, we're proud to announce a new education series in partnership with @US_FDA and @CPathInstitute designed to help patients and advocates understand their role as drivers of the #RareDisease drug development process. Learn more: bit.ly/3M33jV1
"I am standing here because of the Orphan Drug Act." -Rare community member, Alex Flipse, thanks NORD and the #ODA for helping her beat the odds after her #PulmonaryHypertension diagnosis. #NORDSummit
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