Amy Price @TheRareView
Joined October 2018-
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Following307
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Likes409
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…
We talked about how @ShowersForAll's guests told them about confidently walking into interviews and landing job offers after a shower and change - and being able to better manage their medical conditions. Here are two new stories from they shared today:
Amazing, important and shamefully overdue.
Amazing, important and shamefully overdue.
I was diagnosed 10 yrs ago. Today I watched a webinar from EU on #lipodystrophy that cited a paper I wrote with world experts. #PatientLedResearch is key to advancing science! So much more to do, but for now, I am empowered to carry on. #RareDisease tandfonline.com/doi/abs/10.108…
Are you hiding from Covid-19? Here is why I am. Risk my kid dies=0.01% Risk that I die=1% Risk my mother dies= 17% New result from Jeffrey Shaman at Columbia U. Overall Sars-Cov-2 *infection fatality rate* New York City = 1.45%
An important conversation for those in biotech/pharma to read. I just had conversations around this topic w/ rare disease advocates yesterday. The onus to repair this history does NOT fall on black people. They are the victims of long-standing medical & scientific racism
See this Instagram post by @reesewitherspoon instagram.com/p/CAYJavnAgyL/…
Wonderful report to help in understanding the impact of COVID on patient advocacy groups.

ETF_Arbitrage🇺🇸 @Eqaoorar5950
34 Followers 2K Following 15-30% Monthly | 2 High-Conviction Stocks.Short-Term Gains: 15-20% in Days/Weeks.DM "JOIN" for WhatsApp Alerts. Live Trade Signals • Market Analysis
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
588 Followers 725 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
246 Followers 201 Following Transforming human health through our connected intelligent platform for smart research and patient care #lifesciences #pharmaceuticals #pharma
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
921 Followers 4K Following Committed to #EliminatingStigma associated with #Disability, #PhysicalDifference & #ChronicIllness. 501(c)(3) #PromotingEmpowerment & #ChangingExpectations
Sydney Stelmaszek @SydneyStel
488 Followers 635 Following Supporting African leaders with @LifeChildAfrica to restore communities for generational change - Rare disease mom to Emmitt @cureSYNGAP1 - Wife to @UFDTech
Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Leah @LeahEDSCN2A
963 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
79 Followers 197 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.
Rivista Italiana dell... @RIMalattieRare
197 Followers 433 Following La #Rivista, un sito web dedicato: per fare cultura e colmare il gap di informazione su argomenti complessi come le #malattierare. #RareDisease
Med Point @MedPointsrl
55 Followers 251 Following Ti seguiamo punto per punto #webagency #comunicazionescientifica #eventiresidenziali #webinar #editoria #rivistascientifica #creatività #innovazione
Yssa DeWoody @YssaDeWoody
282 Followers 477 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
428 Followers 938 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
455 Followers 604 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
782 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
150 Followers 587 Following TV quality livestreaming for hybrid and virtual events
LDNBSActionNetwork @LDNBSAction
71 Followers 119 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
502 Followers 912 Following Trying my best to love, help, & respect others in this crazy world. #RareDisease #PatientVoice #FabryDisease #EhlersDanlos #MentalHealth #HealthEquity
Rolling with the Sned... @SnedekerFamily
81 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 Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Jeeva Clinical Trials... @Jeevatrials
412 Followers 2K Following Human-Centric Software and CRO Solutions for Modern Clinical Research: oncology, rare diseases, neuroscience, chronic conditions, cohort studies, HEOR studies.
Danny's Dose @dannys_dose
523 Followers 2K Following Campaign to change Emergency Treatment Protocols in every state for over 32 million Americans requiring specialized care. (501C3)
Jules Walters @julesawalters
849 Followers 1K Following Longevity coach & author helping people 40+ protect memory
DISORDER: The Rare Di... @DisorderRare
907 Followers 206 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
832 Followers 346 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
794 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 166 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 634 Following To improve the quality of life for all those affected by rare diseases in Pennsylvania.
RareiTi, Inc. @RareiTi
171 Followers 512 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
211 Followers 765 Following
Skinny Genes Foundati... @smardiac
473 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
129 Followers 258 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
596 Followers 2K Following Serving Canadian patients & families dealing with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) & Corticobasal Degeneration (CBD)
J @JenHelfer
601 Followers 2K Following Tweets/opinions are my own. Retweets/likes are not endorsements.
The CGD Association o... @CGDAofAmerica
182 Followers 557 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
168 Followers 5K Following Granddaughter daughter granny Leo married Christian mother no drugs, drinking and driving. widow exwife still today.😇😎💚💯
Holly Marie @HollyMarie84
358 Followers 506 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
272 Followers 565 Following Program Manager of International Conference Rare Diseases and Orphan Drugs November 25-26, 2020 Tokyo, Japan
Adam Feuerstein ✡�... @adamfeuerstein
121K Followers 779 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
726 Followers 840 Following MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Coalition Duchenne @CoalitionDMD
2K Followers 747 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
246 Followers 201 Following Transforming human health through our connected intelligent platform for smart research and patient care #lifesciences #pharmaceuticals #pharma
Savannah (she/her) @rx0rcist
60K Followers 328 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 162 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
1.1M Followers 970 Following DETECTIVE DUCK 3 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
419 Followers 240 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
556 Followers 32 Following Every Second Counts! Kiniksa is a biopharmaceutical company developing and commercializing novel therapies for diseases with unmet need.
SynGAP Research Fund ... @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 🎙
Danny Reeves 🇺🇲... @DannyReeves33
2K Followers 293 Following
Andrew Feinberg @AndrewFeinberg
120K 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
963 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 398 Following Journalist | Probably Hungry | ✊🏼 🏳️🌈 | #BlackLivesMatter | 📸 & 🛹 | All Opinions My Own🫡
Rolling with the Sned... @SnedekerFamily
81 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
1.6M 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 475 Following Official X account for RTI International- an independent scientific research institute dedicated to improving the human condition.
rblx.land @RBLXdotLand
129K 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
832 Followers 346 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
18K Followers 4K Following Executive Director, @Disabilitylawco | former Speaker, CO House of Representatives | former President, @CO_MentalHealth | Founder, @PosnerCenter
Giveee @give_zone
24K Followers 5 Following
Colorado Mask Project @comaskproject
179 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
224K Followers 789 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
501K Followers 138 Following Former national level tic-tac-toe player. Still play for fun, but not quite as good. Also, play a LOT of Uno.
Holly Marie @HollyMarie84
358 Followers 506 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
905 Followers 522 Following FOXG1 syndrome is a childhood neurological genetic disorder and is a key to understanding many brain disorders. We are pioneering research to find a cure.
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 951 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, P... @joaocarapinha
15K Followers 11K Following Accelerating the diffusion of new healthcare technologies. Founder @Syenza_Corp
Expanded Access Summi... @Expanded_Access
650 Followers 3K Following Ax-S Pharma, producer of the annual global conference on integrating pre-approval access into clinical drug development.
Zellweger UK @ZellwegerUk
731 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
9K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Probably Genetic @ProbGenetic
602 Followers 758 Following Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.