Stephanie Fischer @RarePOV
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own. linkedin.com/in/stephaniedf… Bucks County, PA Joined May 2012-
Tweets28K
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Followers7K
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Likes32K
.@RareDiseases to host a webinar for parents & other caregivers of teens with #RareDiseases on February 29 at 7-8pm ET which will include mindfulness exercises plus discussions of grief, radical acceptance, boundaries & self-advocacy rarediseases.zoom.us/meeting/regist…. #RareDiseaseDay
Enormously proud and honored to do this important work. ❤️
Enormously proud and honored to do this important work. ❤️
#SCN2A Fact of the Day Knowledge is power, & sharing these insights, we can create a more informed & supportive community. Read, learn, & share because awareness is the first step towards understanding & change #SCN2ADay24 #SCN2AAwareness #GlobalAdvocacy #cureSCN2A #HopeForACure
📣 To WIN a FREE OCEANFRONT 2 Room Suite May 2nd-May 6th, 4 nights: 1. FOLLOW us on X. 2. Re-Tweet as many Adventurer Tweets as you want 😉. 3. LIKE this Tweet. @Wildwood365 @wildwoodBwalk @TheWilldwoodsNJ #wildwoodnj #nj #wildwoodnewjersey #wildwood365 Rules next Tweet
Love the willingness to listen to & learn from #raredisease community—> “More often than not, patient groups are teaching us,” says Jodi Rutter of @ncats_nih_gov at @EveryLifeOrg Community Congress
💰GIVEAWAY DAY 8💰 Is there any better gift than CASH?? For a final giveaway we’re adding $250 to one lucky winner’s Cash Back balance 🤑 To enter: -Follow @Rakuten on X -Retweet this post -Tag up to 5 friends in the replies (1 reply = 1 entry)
Registration is open for our #FDARareDiseaseDay event on March 1. Join us to hear from experts on empowering patients and health care professionals with key information and working to advance medical products for rare diseases. fda.gov/news-events/fd…
Two years ago @CBSSundayMorning came to our house to talk about the ALS movement. This summer, they came back to talk about our success, our new projects and our lives. Tomorrow morning Lee Cowan’s piece will air as part of CBS Sunday Morning. I truly hope you will watch it!
Two years ago @CBSSundayMorning came to our house to talk about the ALS movement. This summer, they came back to talk about our success, our new projects and our lives. Tomorrow morning Lee Cowan’s piece will air as part of CBS Sunday Morning. I truly hope you will watch it!
What is a myth or misconception about living with a #RareDisease or #ChronicIllness that you still see spread? Let's combat the myths right here.
Grateful for the rare disease warriors in the space who continue to be the voice of change for so many. ♥️
"People get to be angry. Our job is to be as thoughtful as possible and normalize that this process can be terrifying." - Jessica Dallman (Natural Wisdom Counseling) speaking about how #healthcare providers can support patients and families when delivering #raredisease diagnoses.
"Remove the 'I know what's best' and lay out all the options for families to make the best decisions." - @SaritaEdwards (@EveryoneIsWe) speaking with our panelists about how healthcare providers can foster open communication with patients and families. #familyengagement
Got hockey? It’s gonna be a GREAT Saturday. Check out this action-packed event all benefitting rare disease. This Saturday the fun lasts all day. @KIF1A, @GlobalGenes, #RareAsOne. If any org wants to spread awareness and have a table at the event, come on out! All communities…
Fact: ALS caregivers typically don't take care of their own health. They don't do annual checkups, they don't have their own concerns addressed they don't go to the dentist, ... You get the picture. 1/
@DrCaliff_FDA Califf an article by science writer Ed Yong in The Atlantic: “Technological solutions also tend to rise into society’s penthouses, while epidemics seep into its cracks.” #NORDSummit 3/
"Researchers often think they know the most meaningful endpoint, but that can be different for patients as a whole, but also for individuals within your community. Understanding the patient perspective is the first step." - Heidi Bjornson-Pennell, @ChanZuckerberg #NORDSummit
As I listen to panel, I wish we had time to discuss a difficult concept: There is not "a" patient voice. There are patient voices. They don't always agree. I hope that FDA, sponsors don't insist on consensus before they will work w them. Diverse opinions can help. #NORDSummit
We hosted a meetup of #StudentsForRare leaders from schools and universities around the country here in DC before tomorrow's #NORDSummit. The future of #RareDisease advocacy depends on the folks in this room! Join Students for Rare: bit.ly/3LNJjqh
.@heidibp of @czi: There’s too much to be done to duplicate effort. Do a landscape & identify the gaps you can fill. Be a central provider of resources & convene researchers with patients to align shared priorities to drive #raredisease research. #NORDSummit
95% of #rarediseases patients have no FDA-approved treatment. Any law or policy that discourages companies from doing the research necessary to add an indication for a #raredisease (such as the Inflation Reduction Act) supports the unacceptable status quo. #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 🦓
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
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
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.
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]
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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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
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.
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
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
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
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
The Notorious EEG (M... @TheNotoriousEEG
10K Followers 2K Following Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employer
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
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others.
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
𝙺𝚒𝚖𝚋𝚊�.. @kim_bal_10
393 Followers 2K Following Entrepreneur, Chet, Philanthropist | board @tesla| Founder @ TheKitchen @ BigGreen NovaSkyStories Order my cookbook!DA
Ryan Hodgson @Ryanintheus
195K Followers 187K Following Let’s do life better! CEO of @rysing_tide ~ Coaching | Strategy | Operations • 🇦🇺 in 🇺🇸 • Alcohol-Free • Melanoma Survivor • Host: @ArmourSessions
Udinahmad @udinahmadaja
1 Followers 68 Following
Canadian Association .. @PorphyriaCanada
96 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Owoeye David @davoshalom
773 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…
Alessandra Akai Tsubo.. @SaekoRossi
149 Followers 988 Following Anime and manga lover ♥️ I have APS.. June Is APS Awarness month🎀 Spread awarness or ask to me about antiphosho.. What 🧬🎀🎀🩸
Becky Osborne @Beckyih_Osborne
5 Followers 417 Following Lured the best beauties from all US states 😍 Ready for private meetings See nude photos before a date! Watching this https://t.co/UWdQel48VZ
Bob Leonard @bobleon1
42 Followers 370 Following
Tabitha Frank @TabFrank85
44 Followers 342 Following I'm the president founder of Endosalpingiosis Foundation Inc🎗🎗 ✨#Endosalpingiosis Advocate, mother to an amazing son, 🍀☘🍀💚Rare Disease🦓 warrior!♓
Aymi Ai @Aymi929
72 Followers 398 Following
LeBron Fans 👑 @LeBronJames
923K Followers 1.0M Following LeBron James news. #TeamLeBron #Strive4Greatness.🏆 @KingJames. 👑
lisa📊 @lisafxtrades
99 Followers 5K Following Mom | Trader | Mentor 🧑🏾💻📈☕️🌴📚📊Send me a dm for trading value and education🎯
Judith Woodbury @woodbury3388
317 Followers 7K Following
Sjeldne diagnoser @Sjeldne
476 Followers 415 Following Nasjonal kompetansetjeneste for sjeldne diagnoser | Sjeldentelefonen 800 41 710
JARDIN_Joint-Action @jardin_EU_JA
91 Followers 131 Following JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
Journal of Clinical &.. @JCTR_ASP
569 Followers 3K Following The Journal of Clinical and Translational Research (JCTR) is an open access, peer-reviewed journal that publishes studies with clinical components.
Khalifa.alhasni @Khalifaalhasni3
474 Followers 3K Following
Shanon Bramblette @Shanon0920
711 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
Asa Speaks @AsaSpeaks2
12 Followers 23 Following Parent gives voice to non-verbal child devastated by profound autism and severe intellectual disability. Dialogue inspired by actual experiences.
Focus On Sickle Cell .. @UgandaSickle
251 Followers 1K Following FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
Chris Gisler @ChrisGisler
2 Followers 59 Following
Dr. Jennifer Curtin @jencurtinmd
3K Followers 2K Following Physician. Entrepreneur. Nerd. 🍊YCW22. RTHM co-founder. Recovered ME/CFS. Treated infection assoc illness b4 Covid. Tweets/DMs are my own & not medical advice.
Beauty @boanaez49943
89 Followers 4K Following 아주 아름다운 나라예요. 당신 나라의 남자들은 매우 신사적입니다. 당신과 친구하고 싶어요 https://t.co/qWp8iADfJt LiYY1225543 https://t.co/llUnhXH2a5
Haystack Project @HaystackProject
200 Followers 269 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
ArrowDX @ArrowDxInc
64 Followers 448 Following ArrowDx is creating precision diagnostics by combining AI and nanotechnology through a versatile, portable technology for a variety of applications.
بلال الشرفي @fQqWM0rF8yGRh27
974 Followers 4K Following افكر في ذكر الله و موظف في وكالة الانباء اليمنيه سباء
Bryant McGill @BryantMcGill
38K Followers 42K Following Thought Leader 🇻🇦 Adopted Offspring of Howard Hughes 🧬 Technologist ✮ WSJ & USAToday BestSelling Author ✮ 10 Million Followers ✮ UN Appointed Global Champion
Emma McEvoy @DrEmmaMcEvoy
1K Followers 2K Following Assistant Professor in Law at Dublin City University, School of Law and Government. Tweets on procurement law, health procurement, social enterprise
Andy Talley @AndyTalley10
285 Followers 375 Following Attempting to undo 50+1-Ocracy & return The USA to a beloved Constitutional Republic. Down with the Sickness.
🌷🌷مرام بن.. @NMnayk87665
953 Followers 5K Following ولا أجامل بأحاسيسي ولا أقبل في الهوى إحسان ولو صدقي يخسّرني .. تشرفني خساراتي .. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀
QueenJ @QueenJRE42522
12 Followers 87 Following
Smepses @smepses19229
147 Followers 4K Following
walaa mohamed @walaao65023946
2 Followers 61 Following
Bree @BreeBreeleah
205 Followers 1K Following
FendiFiasco @FiascoFend3432
7 Followers 292 Following
Barbie for Congress (.. @BarbieHardnHall
3K Followers 3K Following Democratic candidate for U.S. Congress, Florida District 11 Wife, mother, Rare Disease Advocate, MLD mom It's time to give FL-11 its voice back.
Meagan @Meaganeprice
0 Followers 11 Following
Ahmed Hamada @AhmedHa18889482
1K Followers 7K Following
jennifer smith @1baileycat
3 Followers 3K Following
Shawn Larry @larry_shaw66603
283 Followers 952 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
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
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.
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]
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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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
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.
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
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.
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
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Brad Loncar @bradloncar
69K Followers 365 Following #Biotech, Founder of @BiotechTVHQ, KC native, @univmiami hurricane.🧬🙌
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
The Notorious EEG (M... @TheNotoriousEEG
10K Followers 2K Following Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employer
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
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
revellbooks @RevellBooks
12K Followers 994 Following Publishing books that inspire and equip readers to find hope and help for everyday life.
Novel Suspects @NovelSuspects
13K Followers 405 Following Lining up the best in crime. From @hachetteus.
Abbey Hauser @OwningMyStory
184 Followers 176 Following Rare Disease Advocate | Classical Ehlers-Danlos Syndrome | Adaptive Sports Enthusiast | Collector of Quotes | Occasional Superhero | she/they
Adventurer Inn @AdventurerInn
2K Followers 4K Following We give away FREE ROOMS to Loyal Followers. Located on the BEACH and BOARDWALK In WILDWOOD, NJ. #ILoveWILDWOOD
PNH Global Alliance @GlobalPnh
134 Followers 176 Following An alliance of global patient organisations supporting those living with PNH
Sumitomo Pharma Ameri.. @SumitomoPharma
79 Followers 2 Following Sumitomo Pharma America is a science-based, technology-driven biopharmaceutical company focused on delivering therapeutic and scientific breakthroughs.
Delizza Patisserie @EatDelizza
12K Followers 519 Following Delizza brings delight to every table with a collection of distinctive desserts inspired by our Belgian heritage.
Rareminds @RaremindsUK
983 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
National Press Founda.. @NatPress
11K Followers 4K Following We make good journalists better. All of our fellowships and programs are free and on the record. We also celebrate journalistic excellence through our awards.
Eartheasy @eartheasy
5K Followers 3K Following Eartheasy is a family owned business committed to bringing you practical products and information for sustainable living. #GoEasyOnTheEarth
Angie M Fuller @AngieMFull98909
4 Followers 8 Following
Dr. Mike @mybarra
516 Followers 555 Following @PhRMA Chief Medical Officer @GtownEM Attending Physician Opinions are my own
Ajay Chitnis @Chitnis8Ajay
76 Followers 45 Following Father Scientist artist. we study self-organization of cell fate, collective migration,and morphogenesis in development. make models, mobiles, mosaics for fun.
Dr Carleen Walsh @CARLEENWALGAL
519 Followers 2K Following Wife & mum|👩👼👼🙎🏼👶|Donegal IRL|Rare Disease Caregiver|Teacher|SEN|Psych @RCSDungloe @UlsterUni @BamfordCentre @RAiNAllIreland @CSENID @atu_ie #raredisease
Suzanne Kelman @suzkelman
7K Followers 8K Following International Amazon Bestselling Author of Women's Fiction.
Science Magazine @ScienceMagazine
4.0M Followers 483 Following The world's leading outlet for cutting-edge research in all areas of science. Follow @NewsfromScience for stories from our news team.
Dreamscape Lore @dreamscape_lore
280 Followers 15 Following Exploring new worlds one audiobook at a time. 🎧✨
Dr. Heather Mefford @hcmefford
3K Followers 948 Following Physician, scientist, mom, wife #genetics #epilepsy #pediatrics #raredisease @StJude @StJudeResearch formerly @UWMedicine
Thomas J. Henry Law @thomasjhenrylaw
41K Followers 793 Following The name you know the firm you trust
U.S. SOY @ussoy
2K Followers 205 Following U.S. Soy brand envisions a world where soy is a fundamental ingredient in solving the broad challenges of humanity.
Elli Brimble @IDreamofGenes
275 Followers 457 Following Neurogenetics Counselor now @ciitizen @invitae @foxg1research
UM V-BID Center @UM_VBID
3K Followers 3K Following University of Michigan Center for Value-Based Insurance Design: Improving health outcomes & containing costs using clinical nuance.
AirPop @airpophealth
825 Followers 343 Following No-one wants to wear a mask, but if you must, you'll find our reusable daily respirators deliver 97% filtration, unrivalled comfort & effortless breathability.
HealthySnackBoxes @healthysnackbo1
9K Followers 4 Following We'll send you a box of FREE healthy products, and all you do is let us know what you think. Shipping is Free. No credit card required EVER!
Lauryn Craine-Bhavnan.. @wishkhh
625 Followers 596 Following English graduate and librarian in training who loves to horde books 💚🏌🏽♀️💚 Chicago is my home, she/her, Tweets and thoughts are my own #Narcolepsy #IH
David Begnaud @DavidBegnaud
272K Followers 3K Following Lead National Correspondent for @CBSMornings, @CBSNews. Boo to a Boo. Uncle. Brother. Louisianan. Cajun. Paddington’s dad. Retweets ain’t opinions.
Julia Roller @julialroller
1K Followers 779 Following Author of Mom Seeks God, disciple of Jesus, wife, mom of three, speaker, editor, Red Bud, reader, night owl, breast cancer survivor, tea fanatic.
Rachel Dodge @RachelDodgeBks
2K Followers 2K Following Kindred Spirit, Saved by Grace. Bestselling author: The Anne of Green Gables Devo, The Little Women Devo, The Secret Garden Devo, and Praying with Jane!
Janet McHenry @LookingUpFirst
4K Followers 5K Following Prayerwalker: Walk for my health - pray for my town. Author, speaker, writing teacher/coach, church prayer coordinator, CA NDP leadership team, Bible teacher
Kate Battistelli @katebattistelli
2K Followers 934 Following Author: The God Dare and Growing Great Kids, Cohost: The Mom To Mom Podcast, speaker, mentor, "The Impossible is God's Comfort Zone."
Michelle Ule @Michelleule
1K Followers 759 Following Biographer of Mrs. Oswald Chambers & Lettie Cowman, +9 more books; UCLA grad who spends an inordinate amount of time researching. Loves laughter & gentle irony.
Mary Alford Author @maryalford13
3K Followers 2K Following 💕USA TODAY bestselling author📚 ✝️Jesus freak✝️☕Certified coffee drinker☕ Married to best man ever and truly blessed💕 📚Want a Free Book?👇
Cheryl Grey Bostrom @cheryl_bostrom
2K Followers 2K Following Tyndale novelist, PNW naturalist, photographer, #author of award-winning #SugarBirdsbook. IG @cherylgreybostrom
Linda J. White @rytn4hm
2K Followers 455 Following I write authentic FBI and K-9 SAR thrillers–with a twist of faith. My hope is that readers of all stripes will enjoy my #whiteknucklefiction. #ACFW #CFAuthors
Heather M. Kaufman @hmkstories
3K Followers 2K Following 📚 Christian fiction author 🎉 Up from Dust releases with @bethany_house 1-23-24!
Becky Beresford @writerbeckyb
3K Followers 914 Following Wife. Momma. Writer. Lover of Jesus, people and coffee. #hopewriter #encourager #worldchanger ✨I help women live empowered by Christ. Join my tribe 👇🏻 ✨
EndTheLegacy @End_The_Legacy
329 Followers 65 Following Patient led organization providing education and support , and advocating for, those impacted by Genetic ALS and FTD.
Sarah Potter @storyofthelotus
357 Followers 1K Following Storyteller, hidden history hunter, filmmaker, widow. Currently working on a documentary about AFM
Linseigh✨ @Linseigh
486 Followers 486 Following Actress, singer, writer, & patient advocate. NYU '19; Cambridge '22. 2nd Cover Faye & Tina @thedriftersgirl. Rep. @cowleyknoxguy.
Simply Kristy @SimplyKristyD
575 Followers 761 Following Wife. Mother of 3 awesome kids. Founder of Chronically Simple (@cshealthapp). #EDS Warrior. Advocate for patient empowerment. Lover of coffee.
Amy Ma - 馬錦華 - .. @Ctzen_Improver
3K Followers 4K Following Lover of chocolate and equity. access + equity + healthcare, ally, tea-drinking, babywearing educator. Opinions are my own. @[email protected]
Ben Prosser @Prosser_Lab
2K Followers 274 Following Assoc. Prof @PennMedicine | Rare-disease dad. Trying to fix hearts AND brains. Myocytes, Microtubules, Heart Failure | ASOs, RNA, NeuroDevelopmental Disorders.
Eating Disorders Coal.. @EDCoalition
8K Followers 918 Following The federal advocacy organization for eating disorders
CTNNB1 Connect & Cure @ctnnb1cc
280 Followers 454 Following Connecting families, raising awareness, finding treatments and a cure for CTNNB1 Syndrome 🧬💛💙 https://t.co/dZAf1GmhAJ
SHINE Syndrome @SHINESyndrome
204 Followers 194 Following DLG4 Synaptopathy / SHINE Syndrome *Managed by the board of the SHINE Syndrome Foundation
Eating Disorder Hope @EDHopeGlobal
20K Followers 1K Following Eating Disorder Hope promotes ending eating disordered behavior, embracing life and pursuing recovery. Our mission is to foster healing & recovery.
Katie Taylor, CCLS @childlifeoncall
605 Followers 582 Following I talk about child life services and empowering parents (spoiler alert: the two together are 🔟/🔟) | Co-founder, podcaster, Child Life On CallHoly cow! You all are amazing! I will spend the weekend following everyone! Stay awesome and happy weekend!
Tomorrow will be Follow Back Friday. If you want a follow, just reply to this post or follow me tomorrow. Hip hip hooray!!!
My biggest fear is not dying, but not living every moment I am given. Good night moon.
Today, Indiana state officials, and professional and patient groups joined us for an opening ceremony event to celebrate our new #radioligandtherapy manufacturing facility in Indianapolis. RLT is changing the way cancer is treated, and Novartis is proud to lead the way.
#SpotlightSunday Let’s give it up for our Mobile Giving Sponsor, @ultragenyx Pharmaceutical! We are so excited to have their support for #TheStyleShow again this year. It’s going to be the best fashion show of the year and we are so grateful to have their amazing support.
Enormously proud and honored to do this important work. ❤️
Wendy Chung 's career has been devoted to improving the lives of families affected by #rare #genetic #neurodevelopmental disorders. As PI at @s_searchlight Wendy has immersed herself in #TranslationalResearch to improve care while seeking #cures. rarerevolutionmagazine.com/dr-wendy-chung…
#SCN2A Fact of the Day Knowledge is power, & sharing these insights, we can create a more informed & supportive community. Read, learn, & share because awareness is the first step towards understanding & change #SCN2ADay24 #SCN2AAwareness #GlobalAdvocacy #cureSCN2A #HopeForACure
NORD welcomes our new Member Organization, @MyositisSupport! Myositis Support & Understanding (MSU) improves the lives of people living with #myositis through education, support, advocacy, and research. Learn about all of NORD's Member Organizations: bit.ly/3ZO44Wu
What’s the kindest thing someone has done for you? #Kindness it matters.
When something awful happens to you, you have to remember to make space to laugh. Thankfully, my daughters are at the age where they find my dad jokes hilarious. I know that will change when they are teenagers, so I am enjoying this time as much as I can. Good night moon.
📣 To WIN a FREE OCEANFRONT 2 Room Suite May 2nd-May 6th, 4 nights: 1. FOLLOW us on X. 2. Re-Tweet as many Adventurer Tweets as you want 😉. 3. LIKE this Tweet. @Wildwood365 @wildwoodBwalk @TheWilldwoodsNJ #wildwoodnj #nj #wildwoodnewjersey #wildwood365 Rules next Tweet
We're thrilled for @MindyHSpeaks & Madison Lawson for receiving @EveryLifeOrg's RareVoice Award. We thank them for their vulnerability in sharing their experiences traveling by plane in a wheelchair to MDA’s Hill Day to speak with legislators. #AccessibleAirTravel #RAREVOICE2023
Can’t press snooze on this alarm clock.
💰GIVEAWAY DAY 8💰 Is there any better gift than CASH?? For a final giveaway we’re adding $250 to one lucky winner’s Cash Back balance 🤑 To enter: -Follow @Rakuten on X -Retweet this post -Tag up to 5 friends in the replies (1 reply = 1 entry)
Awesome feature of @NeenaNizar and The Jansen's Foundation! She's a remarkable #RareDisease advocate! Our executive director admires her work and the guidance she shares with fellow advocates! #DisabilityAwareness #InclusionIsAlwaysIn #CareAboutRare people.com/mom-and-sons-h…
#ASH23 Walking into my 27th consecutive @ASH_hematology Annual Meeting (1 virtual). #SanDiego is special place as host to #ASH97 (twitter was not a thing yet), my first one. Amazing progress against blood diseases and MPNs! #MPNSM @WakeCancer @LevineCancer @wakeforestmed
Greetings San Diego! 😁 #ASH23
#ASH23 Looking forward to learning together, teaching, raising awareness for patients with #RareDiseases collaborating, new ideas 💡 & exhilarating debates & discussions @ASH_hematology meeting !! @sanamloghavi @acweyand @tmprowell @mtmdphd @mpdrc |#MPNSM #BPDCN #leusm
@RepDianaDeGette and @SenBobCasey probably remember this well. @HouseCommerce @EnergyCommerce @SenateGOP @SenateDems (@IAmBiotech @RareAdvocates @RarePOV and others probably do as well.) 🦓👍🇺🇸💊
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