Libbie Read @LibbieRead
You'll catch me running, knitting, solving problems or deliberating over my Fantasy Football team. Rare disease advocate. Joined July 2015-
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Applications for cohort 2 of ‘Recruiting a Rare Board’w/ @GettingonBoard are OPEN! Learn how to #Recruit & retain #Trustees through a series of masterclasses, clinics & feedback sessions 11 #PatientGroups can join the programme, which begins March 2022 rarebeacon.org/applications-a…
We at ANNE have got a very exciting announcement for you today... We are launching our first ever #StudentAnalysis Challenge in March this year! 🎊 Click the link or follow the thread to find out more (1/4) ⬇️ eventbrite.co.uk/e/annes-studen…
Breaking News! We have teamed up with @GettingonBoard to bring you an exciting new project called Recruiting a Rare Board! Learn how to recruit new board members in a professional manner & hire a group of interesting, skilled & diverse people Apply: ow.ly/LWcA50G3dCN
Looking for a #Summer #Internship? Apply to jointly #Intern with Costello Medical and us! Learn more about this #DesignInternship to see what you think The start date will be 5th July 2021 or 16th August 2021 and the internship will last for 6 months costellomedical.com/careers/curren…
The proof may be in the pudding, but we believe the proof is actually in the #Data! Our next #Online #RareWorkshop will focus on data use, collection and storage. Join us on 7th - 9th July for this three day workshop! 👉 ow.ly/3Wjy50F7y4U
It's the news you've all been waiting for! 🤩 More than 500 events have full landowner permission to return, which means we now have enough to confirm a restart date for 5k parkrun in England on Saturday 26 June. Read more 👉 parkrun.me/w3qg5 🌳#loveparkrun
Still haven’t claimed your FREE ticket to Drug Repurposing for Rare Diseases 2021? Here's 5 reasons why you should attend #DrugRepo21 curtesy of this week's blog! 👉ow.ly/s4pg50F3hgT
We are now recruiting #Mentees and #Mentors for the sixth round of our Patient Group Mentoring Programme that begins on 14th July 2021! Deadline to #Apply: 4th July Learn more! 🤝ow.ly/HG3250EXsEc
Are you an individual or employer exploring skills needed for a career in #DataScience? 👩💻 If so, we've got an event for you! @datajamne's #LevelUpFast 6th May webinar will present industry experts' thoughts on how to better equip people for data roles eventbrite.co.uk/e/datajam-even…
🚨Sign up for our #LevelUpFast #Datajameventseries webinar on #DataSkills with @datajamne & @AnalystNetNE Hear from speakers including ✔️@BalticTraining ✔️@gatesheadcoll ✔️@GeekTalent ✔️@UniofNewcastle & more to be announced! 📆6 May @ 2pm Register👉t.ly/yqEf
Meet the #Rare #BoneDisease #ResearchStudy team! Get to know the people behind a new research study that’s looking to learn about life with a rare bone disease. They need 6-11 more participants for their study, so RT to help them find them! mcds-therapy.eu/meet-the-rare-…
Don't miss the @BarriersDown and @findacure webinar 'Ensuring Inclusive Communication around Genetics'. Genetics is complex, let's ensure our messages are right and take into account the beliefs and practices of the communities we serve 👇👇 findacure.org.uk/event/webinar-…
"Extra costs of living for disabled people can be over £500 per month. It is frustrating that it has taken a pandemic, mass unemployment, and the pinching of pursesstrings due to furlough wages, to finally grasp that a life on benefits is not a life of ease" Source: @DisRightsUK
Growth is the wrong economic goal for a green and fair recovery - even if you call it ‘green growth’. Now is the time to redesign the economy to address inequalities & tackle the climate crisis. We need a #WellbeingEconomy - not business as usual with green spin #Budget2021
It's #NationalLegoDay! 👷♂️ Did you know that the moulds used to produce LEGO bricks are accurate to within two-thousandth of a millimetre? This means only around 18 in a million bricks fail to meet the company’s high quality standard. More Lego facts: natgeokids.com/uk/kids-club/e…
When building #dashboards or analytics applications, do you consider design concepts just as typography, white spacing or labelling? If your answer is no, next week's webinar is for you! 📅 19 Jan ⏲️ 1-2pm 💰 FREE Sign up here: ow.ly/742X50D9lZX @NICDATA @datajamne
How is #lockdown affecting your community? We need stories that highlight the impact on the #genetic, #rare and #undiagnosed community? Pls RT and ask your community to help. Email [email protected]. #RealLife #Covid19 #lockdown3 #Covid19UK
Disabled people don’t ‘overcome their disability’. When disabled people succeed, what they overcome are societal barriers. Important to acknowledge and reframe in this way if we are to shift perceptions and raise awareness of what really disables people 🚫 🌎
In partnership with @HealthwatchE, we’re proud to launch #BecauseWeAllCare, which aims to encourage more people to share their views with us about their health and social care. Learn more about the new campaign and how you can get involved: cqc.org.uk/get-involved/s…
Last night I certified far more deaths than I can ever remember doing in a single shift. The little things hit you: a book with a bookmark in, a watch still ticking, an unread text message from family. Pandemic medicine is hard.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K 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.
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
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
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Yoni - יוני (and ... @Primary_Immune
46K Followers 25K Following Proud Jew. Proud Israeli. הודו לה' כי טוב כי לעולם חסדו offline every Shabbat
MayRo @MRoseRoberts
320 Followers 258 Following Chief Operating Officer @RareBeacon 🔥 | Diet Coke Addict🥤 | West Wing Aficionado📺 | Eurovision Fanatic🎤 | Keele Grad 2014🎓 | Views Are Mine 🗣
Shearez @ShearezouBPv
8 Followers 350 Following
Smasor @Smasor5tsw_D
5 Followers 350 Following
Rare-X @RareX_2024
109 Followers 331 Following Rare-X 2024, Africa's leading conference on rare disease treatment and access, will be taking place at Indaba Hotel, Johannesburg from 14-17 February 2024
CRID - Unique Patient... @_TheCRID
292 Followers 655 Following More data sharing, less data silos. I prefer BlueSky . Find me at: https://t.co/UtXFYW1OZx
SoniyaFit @SoniyaFit
4K Followers 2K Following Ultra-Rare Disease Warrior 🧬 Familial Chylomicronaemia Syndrome (affects 1 in 1 million) | Healing Out Loud
NCL_RareDisease @NCL_RareDisease
611 Followers 837 Following @UniofNewcastle Centre of Excellence for Rare Disease works with @NewcastleHosps @NHIPartners & more, to constitute a 'Newcastle RD' community(Tweets V.Hedley)
Metabolic Support UK @weareMSUK
397 Followers 408 Following Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.
AFM Film @AFMfilmdoc
299 Followers 2K Following A documentary that explores when life can change in an instant. Bringing awareness to #RareDisease and Acute Flaccid Myeletis
PeacesofMeFoundation @PeacesofMeFdn
923 Followers 4K Following Committed to #EliminatingStigma associated with #Disability, #PhysicalDifference & #ChronicIllness. 501(c)(3) #PromotingEmpowerment & #ChangingExpectations
NE.ON.Event 🇬🇧 @NEONEVENT
755 Followers 4K Following In association @NEONPHOTOUK @NEONGENRES @NEONWRESTLING @NEONFILMUK @NEONTOYSUK @NEMSUK
@ODExpertGroup @odexpertgroup
625 Followers 3K Following Established in 2020, the European Expert Group on Orphan Drug Incentives brings together representatives of the broad rare diseases community.
Building Futures East @bfenewcastle
2K Followers 2K Following This account is no longer monitored - please find us on Bluesky instead: https://t.co/U0BKU0q6lu
What is my illness? @SkinSulfur
9 Followers 169 Following Looking for a medical diagnostic. The SUN/LIGHT exposition is my problem now. My symptoms started 1,5 years before covid. My other account: @hiperacusiaCAT
E. Ewane Germain @ewane_germain
3 Followers 21 Following Qualified and Dignified by Divine Grace and Providence
OR65 University of Ba... @OR65Bath
626 Followers 2K Following #OR65: The OR Society's Annual Conference. We're celebrating our 65th conference on 12-14 September 2023. Call for papers, posters and early bird is open now.
Dr Hannah Piercy @hannah_piercy
3K Followers 3K Following Resistance to Love in Medieval English Romance (OA): https://t.co/BdaoRgJ7O2 | @unibern postdoc | Medieval romance, the senses, emotion, consent | She/her
Annette Fournier, aut... @AnnetteFournie8
79 Followers 197 Following Writer, advocate, special needs mom and part-time farmer. #raredisease #rarechromo #specialneeds
Loretta MacInnes @LorettaMacInnes
121 Followers 170 Following Founder, Writer, NED, Rare Disease Advocate
The Student Voice Pri... @RDStudentVoice
253 Followers 332 Following Closed for entries! Annual, international essay competition for medical & nursing students focused on rare diseases📝💊🩺 Run by @RareBeacon & @M4RareDiseases
TMAPrecisionHealth @HealthTma
50 Followers 133 Following On a mission to improve healthcare delivery for rare and complex disease patients around the globe.
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
Anna Luiza @sma_anna2019
418 Followers 2K Following Official intl profile of @ame_anna2019 👧🏻 SMA1 fighter 🎂2 years old 💉 My life DEPENDS on Zolgensma! 🧬 To help Anna ⬇️ https://t.co/Txwu5yVSfj
Analyst Network North... @AnalystNetNE
556 Followers 728 Following Welcome to ANNE. We connect analysts in North East England to learn and explore new ideas. NE chapter of @TheORSociety. Collaborate with @DataJamNE and @NICDATA
Britt Anderson @BrittAn99894409
270 Followers 863 Following I am a rare disease advocate. I also am blessed to parent 2 of my nieces with my mother 😊. I want to help fight for change and be the best me I can be.
Dr. Maryam @DrMariamalshehi
738 Followers 1K Following استشارية أطفال وأمراض وراثية مدينة الشيخ خليفة الطبية بأبوظبي وعضو المجلس العربي لأبحاث الجينوم و عضو مؤسس لمجموعة الدعم الأسري للأمراض النادرة
Breaking Down Barrier... @BarriersDown
1K Followers 3K Following BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
Rachit Shah @Rachitforhealth
3 Followers 166 Following Master’s in business management with over 13 years of Investment Banking experience
Alexandra Obregon @consultomica
85 Followers 238 Following Latina mom, citizen of the world. Genetic counselor, biomedical anthropologist, molecular biologist, science educator, #DemocratizeScience
Project 8p @chromosome8p
537 Followers 373 Following Project 8p is a non profit committed to finding treatment with translational research, advocacy and data sharing for Chromosome 8p disorders.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Ronny Schmidt @RonnySchmidt84
124 Followers 239 Following Head of Contract Research at #Sciomics; Tweets sind meine private Meinung
--atalkwithdianna @atalkwithdianna
239 Followers 5K Following A Talk with Dianna Survivor TV Show Producer/Host BETM CONSULTANT IT/Education/Business Art Media Entrepreneur Rare Diseases /Cancers Patient Advocate
Priya TN @TnPriya
215 Followers 327 Following Iam from Tamilnadu erode district iam having two SMA (Type 2) kids
Juliermiles @Juliermiles16
1K Followers 5K Following For God and the right thing to do for family and the people in my life.
Stiff Person Syndrome... @TheSPSRF
473 Followers 153 Following Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF
floatingharbor @floatingharbor
161 Followers 245 Following Floating Harbor Syndrome; a rare genetic condition affecting around 80 individuals worldwide. Global developmental delay, short stature, Scoliosis and more.
NTM Info & Research @NTMinfo
1K Followers 1K Following #NTMir Non-profit organization dedicated to patient support, medical education & research for people with nontuberculous mycobacterial lung disease (#NTM).
ePAG Epicare @EEpicare
339 Followers 408 Following We are the Patient Advocates, the ePAG (European Patient Advocacy Group) for @EpiCARE_ERN! #RareEpilepsies #Epilepsy #Neurology
Hélène Le Borgne @HeleneLBorgne
1K Followers 5K Following European, bretonne. Public health & research at EU level, rare diseases, transplantation. Youth & Sports (RTs/follows ≠ endorsements, own views).
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)
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.
Rare Disease Policy @RareDiseasesEU
3K Followers 910 Following @RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own
David Rose @OccipitalHDavid
95 Followers 81 Following Owner of an ultra-rare Disease 🦓 Working in rare disease at: @rarerevolutionm 🧬 Volunteer for @goshcharity
Omar @Omar29337694
7 Followers 103 Following
Beacon for Rare Disea... @RareBeacon
12K Followers 10K 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.
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Rare Disease Day @rarediseaseday
42K 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
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Yoni - יוני (and ... @Primary_Immune
46K Followers 25K Following Proud Jew. Proud Israeli. הודו לה' כי טוב כי לעולם חסדו offline every Shabbat
Ethan Perlstein bio/a... @eperlste
19K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases $CURES, evo pharmacologist, mTOR worshipper $RAPTOR, cofounder of K&L
MayRo @MRoseRoberts
320 Followers 258 Following Chief Operating Officer @RareBeacon 🔥 | Diet Coke Addict🥤 | West Wing Aficionado📺 | Eurovision Fanatic🎤 | Keele Grad 2014🎓 | Views Are Mine 🗣
EURORDIS-Rare Disease... @eurordis
32K Followers 1K 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.
Shit Planning @PlanningShit
137K Followers 689 Following A celebration of all the Shit Stuff imposed on our environment. Perpetrated by Architects, Planners, Surveyors, Engineers & other environmental ne’er do wells.
https://bsky.app/prof... @northcoders
6K Followers 3K Following A coding bootcamp experience like no other | This account is no longer active - Find us over on https://t.co/F6YLqP1kjd
Newcastle Data @NewcastleData
2K Followers 673 Following Bringing together academic expertise in digital technologies and data with the aim of transforming society through pioneering research #NewcastleData
Jodie Nicholson @jodienic_music
849 Followers 335 Following It doesn’t get any happier from here. New single ‘Sleep On It’ out now 🛌
brap @braphumanrights
4K Followers 2K Following Hello - we're brap, one of the country's leading equalities and human rights charities. Find out more about us here:
West End Refugee Serv... @WestEndRefugee
1K Followers 967 Following Supporting and empowering people seeking asylum and refugees on Tyneside. 🧡 Tweets from team #RefugeesWelcome #WhoWeAre #TogetherWithRefugees
Building Futures East @bfenewcastle
2K Followers 2K Following This account is no longer monitored - please find us on Bluesky instead: https://t.co/U0BKU0q6lu
Sew Sisters Studio @SewSisters_
308 Followers 161 Following This page is no longer monitored — please follow Building Futures East on Bluesky instead: https://t.co/nVFVl8u4Kh
Ginny & Tonic @GinnyAndT
4K Followers 1K Following Disabled lawyer. I like talking about whales, equity, noodles, feminism and board games. She/her.
Northumbria Police @northumbriapol
174K Followers 685 Following To report a crime send us a private message, but always call 999 in an emergency.
East End Women @eastendwomen
2K Followers 458 Following Part of Building Futures East, we are a community programme for women in the Newcastle area. Domestic abuse recovery. Trans inclusive, for everyone.
OR65 University of Ba... @OR65Bath
626 Followers 2K Following #OR65: The OR Society's Annual Conference. We're celebrating our 65th conference on 12-14 September 2023. Call for papers, posters and early bird is open now.
Breaking Down Barrier... @BarriersDown
1K Followers 3K Following BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
The Student Voice Pri... @RDStudentVoice
253 Followers 332 Following Closed for entries! Annual, international essay competition for medical & nursing students focused on rare diseases📝💊🩺 Run by @RareBeacon & @M4RareDiseases
David Lammy @DavidLammy
784K Followers 5K Following Deputy Prime Minister of the United Kingdom. Lord Chancellor and Secretary of State for Justice. MP for Tottenham.
Paula Richardson @PaulaFreeSpirit
231 Followers 393 Following Senior Executive Assistant @NAOorguk & @iaap | 🇩🇪 & 🇮🇹 @LCSLeeds | MBA @DUBUSSCHOOL | PRINCE2 @PeopleCert | Views are my own | 💜 📚 🍫 ☕ 🏖 🌱 🎶 🎭 🎬 💅
Becki Nunn @BeckiNunnnn
996 Followers 1K Following Rare disease patient and ex medic. Disabled, caught between services and desperate for my life back.🏳️🌈♿
charlie mackesy @charliemackesy
162K Followers 267 Following Love tea, letters,kind eyes, birdsong, my dogs, salty air,well written books and not being shouted at.
UEFA Women's EURO 202... @WEURO2025
195K Followers 532 Following The official home of #WEURO2025, #UWNL, #U19WEURO, #U17WEURO and #Finalissima on X.
Blu Hydrangea @BluHydrangea_
129K Followers 936 Following WINNER OF DRAG RACE UK VS 🌎✨Frock Destroyer 💋 for enquiries contact: [email protected]
CQC syndication @CQCsyndication
680 Followers 4 Following News & info about CQC's syndication of data. Follow to be notified when we update our CSV directory download file. Main CQC account is @CareQualityComm.
RareDiseaseNurseNetwo... @NurseRare
233 Followers 62 Following Helping nurses and clinicians connect in the Rare Disease environment
Jordan Nobbs @JordanNobbs8
128K Followers 1K Following Newcastle United & England Pro Footballer | 12 years a Gooner | Instagram: jordannobbs
Cheryl The Queen 👑 @cheryldragqueen
108K Followers 878 Following The Queen of Essex 👑 Rupaul’s Drag Race UK 🏁🇬🇧 Enquiries: [email protected]
Asttina @AsttinaMandella
34K Followers 1K Following
TheVivienne @THEVIVIENNEUK
151K Followers 943 Following WINNER OF RUPAULS DRAG RACE UK Dancing On Ice, Actor, Singer, TV Personality, Wizard Of Oz West End, Chitty, management and booking [email protected]
BÎмÎηÎ @biminibabes
246K Followers 481 Following
Lawrence Chaney @ShadyLawrence
158K Followers 925 Following 🏴 Winner of RuPauls Drag Race UK 🏁UK - [email protected]
Veronica Green @veronicaqween
52K Followers 2K Following Lancashire lass in london. DRUK Queen. T.V Actor & Professional Triple Threat. For bookings contact Simon at: [email protected]
Tia Kofi @TiaKofi
120K Followers 1K Following 👑 Drag Race UK vs the World winner 🧡 Digital Presenter for BBC Eurovision 📧 [email protected]
RuPaul's Drag Race UK @dragraceukbbc
216K Followers 462 Following Watch #DragRaceUK and #DragRaceDownUnder on @bbcthree and @bbciplayer.
ICA Commission on Vis... @icaviz
474 Followers 230 Following The International Cartographic Association research community focusing on the science of analytical reasoning with spatial data.
National Innovation C... @NICDATA
2K Followers 281 Following The UK's National Innovation Centre for Data, based at Newcastle University funded through @beisgovuk, @epsrc and @UniofNewcastle.
N8 Research Partnersh... @N8research
6K Followers 4K Following Collaboration of the 8 most research intensive universities in Northern England: Durham, Lancaster, Leeds, Liverpool, Manchester, Newcastle, Sheffield & York
Royal Geographical So... @RGS_IBG
60K Followers 1K Following We are the UK's learned society and professional body for geography, supporting geography and geographers across the world.
EconGeog@Newcastle @EconInclusive
434 Followers 236 Following Economic Geographies Research Group at Newcastle University | #inclusivegrowth | #finance | #governance | #work #employment | #resourcenetworks
Newcastle Parks & All... @ParksNewcastle
2K Followers 287 Following Caring for you city's green spaces 💚
Newcastle University ... @NU_Cities
426 Followers 626 Following From Newcastle. For The World. For All Cities. #NUCities #NUGrowingResearch
Newcastle University ... @NCL_NGS
94 Followers 89 Following The official Newcastle University Geography Society account 🌍 Check out our BRAND NEW website ✨
DataKind UK @DataKindUK
7K Followers 1K Following Data analysis, support, and resources, for free, whether you’re a charity, CIC, VCSE, or public sector body.
satRdays @satRdays_org
3K Followers 136 Following @sqlsat-inspired, community-led, regional, affordable conferences around the world to support collaboration, networking, innovation within the #rstats community
@DataJamNE @datajamne
302 Followers 83 Following We create opportunities for people that are passionate about the North East to come together to use their skills to improve the lives of people in our region.
Analyst Network North... @AnalystNetNE
556 Followers 728 Following Welcome to ANNE. We connect analysts in North East England to learn and explore new ideas. NE chapter of @TheORSociety. Collaborate with @DataJamNE and @NICDATA
CQC Press Office @CQCpressoffice
7K Followers 2K Following Contact us using numbers at: https://t.co/wgaUUEODKl… for all media enquiries
David Rose @OccipitalHDavid
95 Followers 81 Following Owner of an ultra-rare Disease 🦓 Working in rare disease at: @rarerevolutionm 🧬 Volunteer for @goshcharity
CQCProf @CQCProf
21K Followers 937 Following The Care Quality Commission account for health & social care professionals and provider organisations in England. See @CareQualityComm for info for the public.
Jill Scott MBE @JillScottJS8
202K Followers 2K Following 👑 Queen of the Jungle 2022 🏴 Ex @England Lioness | ⚽ @Nike Ambassador | 📧 For enquiries: [email protected]Trends for United States
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