Amy Price @TheRareView
Joined October 2018-
Tweets100
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Followers157
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Following303
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Likes402
@antonioregalado Gosh this article seems like a lifetime ago. I'm hopeful with rapid approval and implementation of newborn screening, lives will be saved. Until NBS is in place, parents will still receive the dx too late. This is however a massive, emotional milestone.
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@PatientWorthy For many, it extends the journey beyond the point of being eligible for life-altering treatments or clinical trials.
@rarelikeher MLD...nobody researches it. 1 in 100 are carriers, making it likely that common issues could be related.
@shillhunter6969 @9NEWS Yes, the attack was racially motivated, which is definitely a pattern.
@chrisvanderveen @SouthwestAir I saw a post from an anonymous pilot that said the issue wasn't lack of staff, but rather their antiquated company-wide computer system imploded.
desperately paying bribery payments in the hope of getting control back. She needs help from @Meta to regain control of her account. @eliandella
@Meta 1/2 I have a friend who has a page on FB started 10yrs ago dedicated to her two kids with a rare disease who have undergone Gene Therapy. It documents the lowest lows and highest highs of a mother's love. It has been taken over by someone in Pakistan and she has been
@sally2cat @Medicdad04 @SpicherHeidi @loudguyrickyb @tweetmommybop Migraines...it's hormones/your cycles, bloating...it's your hormones/cycles, heart palpatations...hormones/cycles, joint swelling...hormones/cycles. All awhile these could be rooted in unrelated, very serious issues. Women are more than their cycles!
@sally2cat @Medicdad04 @SpicherHeidi @loudguyrickyb @tweetmommybop And, women's biology is used against them already. It's an excuse for any doctor to not investigate further if they can just say, "it's hormones". Likely, part of the history of the question is because every issue women have surely can be traced back to that.
@Medicdad04 @sally2cat @SpicherHeidi @loudguyrickyb @tweetmommybop Please tell us Patrick
@bad71 @cotswoldsfilly @DrRachaelF To calling the police and their parents when shooters come in.
Amy Price retweeted
It is with a heavy heart that we regret to inform the community that longtime BPD Commander Jay Johnson passed away unexpectedly on Sept 21. Our hearts are broken as we continue to process this loss. Read the full obituary: inmemoriamservices.com/obituary/Jay-J…
While we await @BCBSofAlabama to reverse their decision, here is a fundraising campaign for Celia's family. @caljoyfndtion classy.org/campaign/save-…
7). This decision @BCBSofAlabama is based in your complete and utter failing to do the right thing which is backed by science, longitudinal data, long-term financial benefit to you and the family and basic decency. I hope your sense can prevail where your decisions have not.
1) "The health and well-being of our members and Alabamians is our top priority". This is the line you see when visiting @BCBSofAlabama. At the same time, a little girl named Celia Grace, diagnosed with a terminal condition called Metachromatic Leukodystrophy and prepared to
投資なんでも相... @Eqaoorar5950
46 Followers 2K Following 【完全無料】 25年の株式投資プロチーム（運用資産500億円以上）が提供：毎日の市場分析レポート ＋ 優良成長株のピックアップ。プロの情報を無料で。まずはお気軽にお問い合わせください。
Antonio Regalado @antonioregalado
28K Followers 3K Following Progress in science depends on new techniques, new discoveries and new ideas, probably in that order - {Sydney Brenner}. I write about biotech @MIT @techreview
Simons Searchlight @s_searchlight
2K Followers 3K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
Radio Udaan @radioudaan
561 Followers 717 Following An online radio run by persons with visual impairments, we provide wide knowledge about all that happens in disability sectors, holding India book of records.
Clinakos Inc. @clinakos
208 Followers 199 Following Rare Disease & Oncology Insights with Integrated Patient Data™ and Medically Smart AI™ Agents
Jini Jordan @JiniJordan
2K Followers 2K Following #Syngap1Mom #EpilepsyWarriorMom #CureSyngap1 Advocate
Vicky Arteaga @VickyAArteaga
4K Followers 4K Following Directora para America Latina Fondo Syngap / Co-founder SHER (Sociedad Hispana Enfermedades Raras) / @cureSYNGAP1 Board #SYNGAP1 #RareDiseases
Lauren Perry @LaurenPerry80
2K Followers 2K Following #ColoradoNative☀️⛰️ | #RareDisease Advocate🦓 | #ISFJ✌️| #melomaniac 🎶 | #Xennial💾 | #SYNGAP1🧬 mom | Ops Mgr📃 at #SyngapResearchFund | @cureSYNGAP1💜💙💚
PeacesofMeFoundation @PeacesofMeFdn
899 Followers 4K Following Committed to #EliminatingStigma associated with #Disability, #PhysicalDifference & #ChronicIllness. 501(c)(3) #PromotingEmpowerment & #ChangingExpectations
Sydney Stelmaszek @SydneyStel
460 Followers 634 Following Supporting African leaders with @LifeChildAfrica to restore communities for generational change - Rare disease mom to Emmitt @cureSYNGAP1 - Wife to @UFDTech
Effie Parks @OnceUponAGene
7K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Leah @LeahEDSCN2A
948 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Annette Fournier, aut... @AnnetteFournie8
77 Followers 195 Following Writer, advocate, special needs mom and part-time farmer. #raredisease #rarechromo #specialneeds
M&B Sciences @mbsciencesinc
2K Followers 2K Following Connecting #Patients to the right #ClinicalTrial | #PatientsHavePower | #ClinicalTrialAdvocacy | #ChronicIllness #ClinicalTrials https://t.co/MAICwvfZya
Inspire @InspireIsHealth
17K Followers 12K Following To patients, Inspire is the world’s largest health community. To life sciences companies, we are the leading patient engagement & real-world evidence platform.
Yssa DeWoody @YssaDeWoody
278 Followers 474 Following christian, wife, parent, ring14 advocate, mathematician, runner, cook, adventurer. Cofounder of Ring14 USA and Ring14 International, but these views are my own.
Matt Flesch @MattFlesch2
424 Followers 932 Following Health communications & advocacy @HorizonNews. Chicago fan: Sox Cubs Bulls Hawks @NPUbaseball. Tweets = my own opinions.
Carrie Beale @Carita8
2K Followers 4K Following Online Manager for Comedian Regis Lemke. Actress IMDB, Model, Social Media addict & Super Mom to 8! IG: Carrieabeale CIDP&Cancer Survivor
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Texas Rare Alliance @txrare
443 Followers 598 Following TX Rare is dedicated to improving access and health outcomes for nearly 3 million Texas #raredisease patients through education and advocacy.
Jnetics @JneticsUK
1K Followers 3K Following Jnetics helps prevent & diagnose Jewish genetic disorders in the UK. Know your risk of passing a disorder to your future child. 🧬 https://t.co/exu5lHRGnV
Burnes Burks @BurnesBurks
751 Followers 4K Following ,I like to sing,write poems,listening to music 🎼 ,swimming,playing Basketball 🏀 ,watching TV,Movies going to GYM and comedies
eventvideolive @eventvideolive
146 Followers 580 Following TV quality livestreaming for hybrid and virtual events
LDNBSActionNetwork @LDNBSAction
70 Followers 118 Following The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening.
Sabina Kineen @sabkin12
497 Followers 907 Following Trying my best to love, help, & respect others in this crazy world. #RareDisease #PatientVoice #FabryDisease #EhlersDanlos #MentalHealth #HealthEquity
Rolling with the Sned... @SnedekerFamily
82 Followers 98 Following We are disabled, deaf & legally blind siblings with a rare disease. Follow our unique journey as we beat the odds! https://t.co/hEa755UWbR
Luke Rosen @lukebrosen
2K Followers 423 Following Founder of https://t.co/GkrwXhfkoy and https://t.co/eWtcezWeJc. Firefighter. Works with families affected by neurological diseases and cancer. Baseball and hockey. Proud dad.
Jeeva Clinical Trials... @Jeevatrials
411 Followers 2K Following Design Smarter. Run Faster. Clinical Trials Without Chaos. Streamline protocol design through database lock With our unified software with Clintelligence AI.
Danny's Dose @dannys_dose
505 Followers 2K Following Campaign to change Emergency Treatment Protocols in every state for over 32 million Americans requiring specialized care. (501C3)
Jules Walters @julesawalters
830 Followers 1K Following Board-certified health coach & author helping women over 50 achieve the health they deserve
DISORDER: The Rare Di... @DisorderRare
896 Followers 205 Following Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://t.co/Qjsl21HRH4
Philip Mayfield @p_mayfield352
1K Followers 4K Following Servant of God,Advocate,DrDeath & I,Survivor podcast,USNVET #IncompleteQuad #KFS #Syringomyelia #CRPS #Dystonia #Dysautonomia https://t.co/QbXKjC7Cw7
Mila's Miracle @stopbatten
816 Followers 347 Following Mila fought hard against Batten disease, a rare fatal condition with no cure. Her story is now giving new hope to millions with genetic disease.
Cystinosis CRN @CystinosisCRN
792 Followers 1K Following Cystinosis Research Network is dedicated to supporting research, providing family outreach & educating the public & medical communities about #cystinosis
Cure MLD @cure_mld
109 Followers 164 Following We are on a mission to #cureMLD, a #lysosomalstoragedisorder (LSD) & #leukodystrophy impacting kids & adults. #genetherapy #advocacy https://t.co/AlcnvCedda
PA Rare Disease Advis... @PARareDisease
787 Followers 628 Following To improve the quality of life for all those affected by rare diseases in Pennsylvania.
RareiTi, Inc. @RareiTi
167 Followers 504 Following Managed Access | Better Outcomes RareiTi offers a new system of managed access for people and communities across the globe in the rare disease space.
Patient Partners Inno... @PPIC_Online
205 Followers 754 Following
Skinny Genes Foundati... @smardiac
455 Followers 4K Following Raising awareness 4 genetic disorders causing aortic dissections. Turning tragedy into purpose after losing my dad to the #genetic disorder I was diagnosed with
Living in the Light @stayhomeforrare
127 Followers 256 Following #IStayHomeForRare join us in solidarity with those staying home protecting the lives of children, family members, and friends living with rare diseases.
PSP Society of Canada @PSPSocietyCDA
582 Followers 2K Following Serving Canadian patients & families dealing with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) & Corticobasal Degeneration (CBD)
J @NoNeinNeeNon
592 Followers 2K Following Tweets/opinions are my own. Retweets/likes are not endorsements.
The CGD Association o... @CGDAofAmerica
179 Followers 551 Following The CGDAA is committed to advocating on behalf of patients and X-linked carriers by providing news and information about Chronic Granulomatous Disease.
Frantazha M. C Lucas ... @FranchescaMCan1
162 Followers 5K Following Granddaughter daughter granny Leo married Christian mother no drugs, drinking and driving. widow exwife still today.😇😎💚💯
Holly Marie @HollyMarie84
348 Followers 497 Following Mom. Wife. Catholic convert. Theology Student. Oblate of Saint Benedict. Photographer. Contributor of the Catholic Hipster Handbook 2. Pretty busy. :)
Rare Diseases And Orp... @2020_rare
270 Followers 560 Following Program Manager of International Conference Rare Diseases and Orphan Drugs November 25-26, 2020 Tokyo, Japan
INmune Bio Inc. @INmuneBio
5K Followers 5K Following INmune Bio (Nasdaq: INMB) is developing therapies that harness patient’s immune system to treat disease. Our focus is on #cancer, #Alzheimer’s disease.
Adam Feuerstein ✡�... @adamfeuerstein
127K Followers 798 Following Biotech reporter @statnews. Dog ❤️er. Polk Award winner. #COYS. Said one analyst: The likes of Adam Feuerstein attack viciously. On Signal: stataf.54
Simons Searchlight @s_searchlight
2K Followers 3K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
David Ross @mensraredisease
713 Followers 831 Following MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Coalition Duchenne @CoalitionDMD
2K Followers 748 Following We're on a mission to do everything FUN to raise global awareness for Duchenne muscular dystrophy, to fund research for a cure. Join us and climb Mt Kinabalu!
Clinakos Inc. @clinakos
208 Followers 199 Following Rare Disease & Oncology Insights with Integrated Patient Data™ and Medically Smart AI™ Agents
Savannah (she/her) @rx0rcist
62K Followers 321 Following OG IG is BACK 🥹 Other socials in Linktree • Advocate • Lactation Consultant Pharmacist: OF funds free healthcare🙏🏻💊🤱🏽• Columbia, SC native🏠
Jini Jordan @JiniJordan
2K Followers 2K Following #Syngap1Mom #EpilepsyWarriorMom #CureSyngap1 Advocate
Vicky Arteaga @VickyAArteaga
4K Followers 4K Following Directora para America Latina Fondo Syngap / Co-founder SHER (Sociedad Hispana Enfermedades Raras) / @cureSYNGAP1 Board #SYNGAP1 #RareDiseases
Akili @AkiliLabs
4K Followers 160 Following We're no longer posting updates here. Get the latest news on LinkedIn, our blog (https://t.co/6qLM8LXZ0D) or sign up for alerts (https://t.co/5Qu72ej6WQ).
Rep. Javier Mabrey @javier_mabrey
6K Followers 1K Following CO State Representative for SW Denver | Tenants’ Rights Organizer & Attorney | @CCDedu @CUBoulder & @BerkeleyLaw alum| He/his
Henry Winkler @hwinkler4real
1.2M Followers 994 Following DETECTIVE DUCK 4 is coming this September AND HAZARDOUS HISTORY on the HISTORY CHANNEL Sundays at 9PM ET
Lauren Perry @LaurenPerry80
2K Followers 2K Following #ColoradoNative☀️⛰️ | #RareDisease Advocate🦓 | #ISFJ✌️| #melomaniac 🎶 | #Xennial💾 | #SYNGAP1🧬 mom | Ops Mgr📃 at #SyngapResearchFund | @cureSYNGAP1💜💙💚
Jeffcom911co @jeffcom911co
5K Followers 78 Following Official account for Jeffcom 911, a consolidated emergency communications center for police and fire dispatch. Not monitored 24/7.
TREND Community @trendcommunity
417 Followers 238 Following TREND Community is a digital health company using artificial intelligence to capture current perspectives of rare communities from their social data streams.
Kiniksa Pharmaceutica... @kiniksa
571 Followers 32 Following Every Second Counts! Kiniksa is a biopharmaceutical company developing and commercializing novel therapies for diseases with unmet need.
CURE SYNGAP1 aka SynG... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Dr. Danny Reeves 🇺... @DannyReeves33
2K Followers 305 Following Christian conservative businessman, Entrepreneur, Patriot, Servant, Texan, Anti-woke
Andrew Feinberg @AndrewFeinberg
121K Followers 13K Following White House Correspondent for @Independent | tell me secrets: andrew.feinberg (at) https://t.co/KroaTHajfN / https://t.co/RhT3fSxEIl | signal: andrewfeinberg.82
Leah @LeahEDSCN2A
948 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Patients Rising @patientsrising
6K Followers 3K Following Patients Rising was formed to provide the support, training, and tools #patients and caregivers need to access the treatment they deserve.
Patient Empowerment N... @power4patients
4K Followers 2K Following Empowers patients & care partners at every step of their cancer journey. Empowered #patientchat host. Get personalized support! Text ‘EMPOWER’ to 833-213- 665
𝑽𝑰𝑵𝑪𝑬 @VinnieChant
3K Followers 393 Following Journalist | Probably Hungry | ✊🏼 🏳️🌈 | #BlackLivesMatter | 📸 & 🛹 | All Opinions My Own🫡
Rolling with the Sned... @SnedekerFamily
82 Followers 98 Following We are disabled, deaf & legally blind siblings with a rare disease. Follow our unique journey as we beat the odds! https://t.co/hEa755UWbR
Adopt Me! @PlayAdoptMe
1.7M Followers 28 Following Adopt cute pets 🐕 Decorate your home 🖼️ Explore the world of Adopt Me! on Roblox 🐾 Made by: @UpliftGames Help: @AdoptMeSupport
RTI International @RTI_Intl
19K Followers 505 Following Official X account for RTI International- an independent scientific research institute dedicated to improving the human condition.
rblx.land @RBLXdotLand
128K Followers 0 Following The best way to get free R$! #RBLXLand — Download apps, watch videos, submit surveys and withdraw straight to your account!
Philip Mayfield @p_mayfield352
1K Followers 4K Following Servant of God,Advocate,DrDeath & I,Survivor podcast,USNVET #IncompleteQuad #KFS #Syringomyelia #CRPS #Dystonia #Dysautonomia https://t.co/QbXKjC7Cw7
Mila's Miracle @stopbatten
816 Followers 347 Following Mila fought hard against Batten disease, a rare fatal condition with no cure. Her story is now giving new hope to millions with genetic disease.
Andrew Romanoff @AndrewRomanoff
17K Followers 4K Following Executive Director, @Disabilitylawco | former Speaker, CO House of Representatives | former President, @CO_MentalHealth | Founder, @PosnerCenter
Giveee @give_zone
22K Followers 5 Following
Colorado Mask Project @comaskproject
177 Followers 88 Following Working to provide all Coloradans with DIY masks to help slow the spread of COVID-19. Together, we can protect ourselves & keep our communities safe.
Craig Spencer MD MPH @Craig_A_Spencer
223K Followers 829 Following ER Doctor | Ebola Survivor | Public Health & Humanitarian Response | Historical Determinants of Public Health @Brown_SPH | Member @CFR_org | Emmy Award Winner🏆
Peter Attia @PeterAttiaMD
600K Followers 137 Following
Holly Marie @HollyMarie84
348 Followers 497 Following Mom. Wife. Catholic convert. Theology Student. Oblate of Saint Benedict. Photographer. Contributor of the Catholic Hipster Handbook 2. Pretty busy. :)
INmune Bio Inc. @INmuneBio
5K Followers 5K Following INmune Bio (Nasdaq: INMB) is developing therapies that harness patient’s immune system to treat disease. Our focus is on #cancer, #Alzheimer’s disease.
RarasNoInvisibles @NoInvisibles
55K Followers 7K Following Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
FOXG1 Research @Foxg1Research
962 Followers 545 Following Parent-led global foundation driving the FOXG1 gene therapy to children worldwide, while accelerating rare disease drug development at large.
Aria @aria_price9
32 Followers 65 Following •Denver East Highschool •Colorado Rapids Select •Team Colorado •Class of 23’
Kate | Patient & Heal... @KateTheAdvocate
1K Followers 1K Following SMA warrior & health policy advocate. Weekly correspondent on @PatientsRising podcast. Link below to interview with me on the pod! Personal: @katepecora
Onno Faber @onnofaber
1K Followers 954 Following Possibility thinker, designer, builder, entrepreneur, rare disease advocate, keynote speaker
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Syenza @Syenza_Corp
6K Followers 5K Following Syenza™ is a life science consultancy for accelerating access to innovative healthcare technologies. Founder: @joaocarapinha
João L. Carapinha @joaocarapinha
15K Followers 11K Following Evidence-based public policy to strengthen families and health outcomes. Founder @Syenza_Corp | Ad Maiorem Dei Gloriam | Ph.D. @Northeastern.
Expanded Access Summi... @Expanded_Access
632 Followers 3K Following Ax-S Pharma, producer of the annual global conference on integrating pre-approval access into clinical drug development.
Zellweger UK @ZellwegerUk
719 Followers 3K Following Supporting families with children dealing with the life limiting condition Zellweger Syndrome. With the aim to fund much needed research.
Beyond the Diagnosis @BeyondtheDx
8K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Probably Genetic @ProbGenetic
596 Followers 752 Following Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.
Cure for Vineeth @curevineeth
177 Followers 638 Following Fighting Hunter syndrome(MPS II). Champion. Gene therapy cure seeker #curemps2 #endhuntersyndrome #RareDisease #EveryLifeIsPrecious #MPS2 #HunterSyndrome #rareTrends for United States
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