Rare Disease Team @RareDxResearch

A Canadian research team focusing on rare disease policy. rare-diseases.ca Canada Joined August 2012

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Rare Disease Team @RareDxResearch

4 years ago

B.C. teen with rare disease wins fight to receive costly drug from province | CBC News cbc.ca/news/canada/br…

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Rare Disease Team @RareDxResearch

4 years ago

NIH-supported research survey to examine impact of COVID-19 on rare diseases community nih.gov/news-events/ne…

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Rare Disease Team @RareDxResearch

4 years ago

B.C. funding decision on pricey drug leaves teen with rare disease facing 'scary' future | CBC News cbc.ca/news/canada/br…

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Rare Disease Team @RareDxResearch

5 years ago

Post Doctoral Fellow needed for Data Science in Neurological Diseases. This is an opportunity to work with epi/biostats and machine learning methods on a Canadian study of MS progression. Click here for more details on how to apply: core.ubc.ca/careers/

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Rare Disease Team @RareDxResearch

5 years ago

B.C. patients and families demand access to $700,000 a year drug for rare disease vancouversun.com/news/local-new…

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Rare Disease Team @RareDxResearch

5 years ago

Canadian breakthrough that became the world's most expensive drug, then vanished, gets second chance | CBC News cbc.ca/news/health/gl…

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Rare Disease Team @RareDxResearch

5 years ago

Toronto family turns to fundraising 'boot camp' to help back research into son's rare genetic disorder | CBC News cbc.ca/news/health/me…

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Rare Disease Team @RareDxResearch

5 years ago

Alberta runner Dave Proctor looking to shatter trans-Canada speed record in 2020 to raise funds for Rare Diseases globalnews.ca/news/5905000/a…

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Rare Disease Team @RareDxResearch

5 years ago

His daughter Annabel has a rare disorder. He’s developing a novel gene therapy. wapo.st/2ZFVTzU?tid=ss…

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Rare Disease Team @RareDxResearch

5 years ago

Opinion: Drug-price reforms need not affect research on rare diseases – or the Canadians who have them /via @globeandmail theglobeandmail.com/opinion/articl…

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Rare Disease Team @RareDxResearch

5 years ago

Life-Changing Drugs Almost Nobody Can Afford nyti.ms/2ZndxIC

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Rare Disease Team @RareDxResearch

5 years ago

Ottawa promises to save billions with tweaks to patent drug system | CBC News cbc.ca/news/politics/…

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Rare Disease Team @RareDxResearch

5 years ago

New hope for patients with rare diseases with the launching of a new fund in Singapore str.sg/oy8G

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Rare Disease Team @RareDxResearch

5 years ago

B.C. Minister of Health: approvals for expensive treatment must be based on evidence, affordability citynews1130.com/2019/07/01/bc-…

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Rare Disease Team @RareDxResearch

5 years ago

'This is our only hope': B.C. boy fights for province to fund potentially life-changing drug | CBC News cbc.ca/news/canada/br…

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Rare Disease Team @RareDxResearch

5 years ago

Patient with rare disease pleads for life-saving drug funding | CBC News cbc.ca/news/canada/ot…

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Rare Disease Team @RareDxResearch

5 years ago

Province working on approving life-saving medication for Vancouver Island 3-year-old globalnews.ca/news/5387036/b…

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Rare Disease Team @RareDxResearch

5 years ago

Ontario expands coverage for Spinraza theglobeandmail.com/canada/article…

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CORE UBC @CORE_UBC

5 years ago

Another CORE Post Doc Opportunity! Postdoctoral Fellowship in Data Science for Neurological Diseases, find out more here: core.ubc.ca/careers/

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CORE UBC @CORE_UBC

5 years ago

CORE is hiring a Post Doc for the Economic Evaluation of Precision Medicine for Genetic Diseases - view the posting here: postdocs.ubc.ca/positions/1186

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An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.

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.

29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay

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

Digital magazine giving a voice to those affected by rare conditions and the charities that support them.

Contact us: hello@rarerevolutionmagazine.com

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]

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

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.

National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.

NORD @RareDiseases

41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.

Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓

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 🦓

RDI @rarediseasesint

5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families

Global Genes @GlobalGenes

30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare

Cambridge Rare Diseas.. @camraredisease

8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw

The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm

Orphanet @Orphanet

6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm

Stephanie Fischer @RarePOV

7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.

@Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF

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

CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

CORD @raredisorders

5K Followers 730 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.

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.

Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own

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

An international community for telomere biology disorders. Facebook: https://t.co/tSo9D8CRne | Instagram: TeamTelomere | Email: info@teamtelomere.org

Team Telomere @TeamTelomereInc

2K Followers 5K Following An international community for telomere biology disorders. Facebook: https://t.co/tSo9D8CRne | Instagram: TeamTelomere | Email: [email protected]

National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.

Genetic Alliance UK @GeneticAll_UK

16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.

💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info

Share4Rare @Share4Rare

2K Followers 999 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info

We help clients find rare and non-rare disease patients and caregivers for studies, and connect patients and caregivers with paid research opportunities.

Rare Patient Voice @rarepatientvoic

2K Followers 4K Following We help clients find rare and non-rare disease patients and caregivers for studies, and connect patients and caregivers with paid research opportunities.

FamilieSCN2A @FamilieSCN2A

2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.

Owoeye David @davoshalom

773 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…

My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.

Elsie Megan @poemsandparents

19 Followers 224 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.

DNAUnited @DNAUnited2024

0 Followers 8 Following

An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!

Peer Med Zebra | Rare.. @peermedzebra

72 Followers 295 Following An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!

zelalem Geletu, MD @GeletuZelalem

50 Followers 346 Following

⚠️ 18+ ⚠️ Welcome to my account where I just repost random stuff, my actions depend on who I’m trolling today. I'm not actually Russian / support Russia.

Spaghetti9000 @RussianSpaghet1

98 Followers 1K Following ⚠️ 18+ ⚠️ Welcome to my account where I just repost random stuff, my actions depend on who I’m trolling today. I'm not actually Russian / support Russia.

Congenital Hyperinsul.. @CHIA_India

14 Followers 119 Following

Yosep Wulla @wulla30745

0 Followers 8 Following

Insight Foundry @InsightFoundry

41 Followers 80 Following

Laboratorios Larrasa @LacombeAng976

1 Followers 11 Following

Asociación de Familias con hij@s que padecen enfermedades neurológicas y metabólicas. #epilepsia #enfermedadesraras

Guerreros Púrpura @guerreropurpura

631 Followers 763 Following Asociación de Familias con hij@s que padecen enfermedades neurológicas y metabólicas. #epilepsia #enfermedadesraras

Khushboo Singhal @KhushbooS_93

14 Followers 150 Following Research scholar working in the field of #RareDisease Phd in #humamgenomics

enjoyed 7 years of practically freelance humanities @ VCU
but I am a philosopher musician...solipsistic? perhaps...namaste

J. Scott Parker @JayePsy

33 Followers 321 Following enjoyed 7 years of practically freelance humanities @ VCU but I am a philosopher musician...solipsistic? perhaps...namaste

Pete Sampson @pbsampson

63 Followers 329 Following

Phuong @Phuonger

5 Followers 51 Following

#OncData delivers up-to-date, clinically relevant content for the multidisciplinary #cancer care team including the latest medical news, research, and more.

Oncology Data Advisor @OncData

399 Followers 2K Following #OncData delivers up-to-date, clinically relevant content for the multidisciplinary #cancer care team including the latest medical news, research, and more.

Gemini Fire Dragon, INFJ, Empath, Adventurer, Blingy Boho & Spiritualist trying to save the World One Positive Vibe at a Time❣✌🏼

Leana Brown @LeanaLB

47 Followers 337 Following Gemini Fire Dragon, INFJ, Empath, Adventurer, Blingy Boho & Spiritualist trying to save the World One Positive Vibe at a Time❣✌🏼

🧬Asociacion creada por familias cuy@s hij@s presentan una mutación en el gen DDX3X. Entidad registrada en el Registro Nacional de Asociaciones en mayo de 2022.

Asociación DDX3X Esp.. @DDX3X_ES

177 Followers 325 Following 🧬Asociacion creada por familias cuy@s hij@s presentan una mutación en el gen DDX3X. Entidad registrada en el Registro Nacional de Asociaciones en mayo de 2022.

alekos @bd_alx

159 Followers 440 Following

Laura Williams @LauraWilliams33

47 Followers 983 Following

Moved to Ginny Haessly@HaesslyGinny
Melanoma Cancer Survivor
Medical Advocate Wanna Be
Clinical Trial Participant, irAE Care Activist

g haessly @ginnyhaessly

80 Followers 190 Following Moved to Ginny Haessly@HaesslyGinny Melanoma Cancer Survivor Medical Advocate Wanna Be Clinical Trial Participant, irAE Care Activist

Jack Trujillo @JackTru16084055

44 Followers 48 Following

Vijay kumar @vijay9258721715

23 Followers 397 Following Molecular parasitologist who loves untangling the evolutionary biology of Malaria parasites.

CEO @Future4care
Rejoignez-nous pour développer des solutions de #esanté concrètes et bâtir ensemble la santé digitale de demain.
#Future4Care #startup #ehealth

Agnès De Leersnyder @A_deleersnyder

372 Followers 840 Following CEO @Future4care Rejoignez-nous pour développer des solutions de #esanté concrètes et bâtir ensemble la santé digitale de demain. #Future4Care #startup #ehealth

Future4care @Future4care

2K Followers 754 Following The European accelerator for #eHealth startups. Join us: https://t.co/Mg27BBMj4S #Future4care

Interesting in Kind and Caring-- People. Follow Semiconductors, Stocks, Chemistry and Volunteer and Teach ESL in Queens, NY--I WKD, With 400K, NYC Homeless-NYC.

James Cassidy @JamesCassi42448

746 Followers 5K Following Interesting in Kind and Caring-- People. Follow Semiconductors, Stocks, Chemistry and Volunteer and Teach ESL in Queens, NY--I WKD, With 400K, NYC Homeless-NYC.

毎年2月最終日は「Rare Disease Day」#世界希少難治性疾患の日
@RDDHamamatsuchoは、RDD JAPANの活動に賛同し一人でも多くの方に希少難治性疾患のことを知っていただくため、開催するイベント情報等の発信を行っていきます。
#rdd #rddjapan #rarediseaseday

RDD浜松町ビルデ.. @RDDHamamatsucho

98 Followers 202 Following 毎年2月最終日は「Rare Disease Day」#世界希少難治性疾患の日 @RDDHamamatsuchoは、RDD JAPANの活動に賛同し一人でも多くの方に希少難治性疾患のことを知っていただくため、開催するイベント情報等の発信を行っていきます。 #rdd #rddjapan #rarediseaseday

Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.

Canadian Rare Disease.. @CanadianRDN

226 Followers 592 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.

Cristina Pantir @Caramelka_22

1 Followers 7 Following

champs @kejr35778464

228 Followers 2K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.

Harmony @HarmonyZeQueenB

26 Followers 108 Following You can say I'm a 🌈 striped 🦓 with a 🦄 horn... Am I special? You don't know the half of it! #EDS #Chiari #Zebras #InvisibleIllness 🦓💜

Peter Bell @PB_ScienceMusic

139 Followers 234 Following science / nature / bikes / music

Nisha K. Cooch PhD @NishaKCooch

9K Followers 4K Following Analyzing & communicating value in #pharma | @AAAS_STPF Alum @NSF, Neuroscience research @NIH #MedComms #MedAffairs

MA Anthropology Student, UWO. Research focuses on an anthropological investigation of social support networks for Persons Living with a Rare Disease.

Dima Kassem @DimaKassem1818

28 Followers 104 Following MA Anthropology Student, UWO. Research focuses on an anthropological investigation of social support networks for Persons Living with a Rare Disease.

Telouth @telouth39300

3 Followers 226 Following

Rohit Singh ( मो�.. @Rohit17677697

273 Followers 1K Following

Lucy @Lucy89449401

365 Followers 136 Following

Barby Ingle Official @BarbyIngle

20K Followers 9K Following #AZ State Rep Candidate #LD7 |#PCRC D5, | #IAm #Writer #RareDisease #ChronicPain, #UniversalPetite, Creator of #NERVEmber

Karen Bonczek @BonczekKar41608

8 Followers 67 Following

WEBSITE COMING SOON---

Connecting Patients with Undiagnosed Disorders---

Community | Resource Guide | Specialists Network | Research

undiagnosed.com @Undiagnosed_com

168 Followers 583 Following WEBSITE COMING SOON--- Connecting Patients with Undiagnosed Disorders--- Community | Resource Guide | Specialists Network | Research

Farman @Farman874901

73 Followers 667 Following

Taobck @tao_bck

34 Followers 93 Following

Focused on molecular mechanisms of channel activity and roles of ion channels in diseases. Part of Cantu syndrome interest group @WUSTL @WUSTLcellbio

Colin Nichols Lab @ColinNicholsLab

334 Followers 805 Following Focused on molecular mechanisms of channel activity and roles of ion channels in diseases. Part of Cantu syndrome interest group @WUSTL @WUSTLcellbio

Laura Mongey @venusdiablo_ie

433 Followers 3K Following Fallor, ergo sum

Shirish Bhatia @shiris1490

7 Followers 100 Following

A safe space for diabetics to push past their comfort zone and tap into their strength so they can be their most authentic, flourishing self.

ctrl+alt+well @controlaltwell

883 Followers 2K Following A safe space for diabetics to push past their comfort zone and tap into their strength so they can be their most authentic, flourishing self.

Our researchers & lived experience partners work to improve the health care system for children & youth with special health care needs and their families.

CYSHCNet - Pediatric .. @CyshcNetwork

361 Followers 959 Following Our researchers & lived experience partners work to improve the health care system for children & youth with special health care needs and their families.

Living a #Swiss life. #TravelBiz Hawaii & Calif. MBA #Travel #Marketing Lecturer, Contributor to USA TODAY 10Best, Co-Founder @Outbounding, co-host #TTOT

Sonja Holverson @SonjaSwissLife

25K Followers 27K Following Living a #Swiss life. #TravelBiz Hawaii & Calif. MBA #Travel #Marketing Lecturer, Contributor to USA TODAY 10Best, Co-Founder @Outbounding, co-host #TTOT

Our vision is that every individual and family affected by ED is equipped with the knowledge needed to manage ED effectively and live life to the full.

The Ectodermal Dyspla.. @EDSocietyUK

220 Followers 351 Following Our vision is that every individual and family affected by ED is equipped with the knowledge needed to manage ED effectively and live life to the full.

Digital Media Practitioner, Marketing Tech Enthusiast, Social Media Influencer, Marketing Strategist

Environment l Fight Against Climate Change & Air Pollution

Saurabh Omer 🇮🇳 @saurabh_omer

8K Followers 2K Following Digital Media Practitioner, Marketing Tech Enthusiast, Social Media Influencer, Marketing Strategist Environment l Fight Against Climate Change & Air Pollution

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.

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

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.

NORD @RareDiseases

41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.

Global Genes @GlobalGenes

30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare

Human being. Jew. Israeli.
Primary Immunodeficiency patient.
הודו לה׳ כי טוב כי לעולם חסדו
#Immunology #raredisease #ISRAEL

yoni יוני @Primary_Immune

41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL

Stephanie Fischer @RarePOV

7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.

CORD @raredisorders

5K Followers 730 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

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.

ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc

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

André Picard @picardonhealth

140K Followers 2K Following André Picard is the health columnist at The Globe and Mail and author of "NEGLECTED NO MORE". I tweet about public health, health policy, and journalism.

The Wall Street Journ.. @WSJ

20.6M Followers 1K Following Sign up for our newsletters and alerts: https://t.co/QevH0DLisA | Got a tip? https://t.co/iXIigdOLPr | For WSJ customer support: https://t.co/DZgH9n4vAI

Global Reporting Cent.. @GlobalRepCentre

13K Followers 6K Following Global journalism, done differently.

GenCOUNSEL Project -Optimization of genetic counselling for clinical implementation of genome-wide sequencing. https://t.co/MZ9HqIUzav

GenCOUNSEL @GenCOUNSEL_CA

1K Followers 3K Following GenCOUNSEL Project -Optimization of genetic counselling for clinical implementation of genome-wide sequencing. https://t.co/MZ9HqIUzav

Equal Access @access4rare

49 Followers 122 Following Working to ensure fair and equitable access to our health care system for Canadians suffering from rare disorders

Foundation supporting Research on #RareDiseases and #OrphanDiseases world wide @REACT_Community #RAREvolution #REACTCongress

BLACKSWAN FOUNDATION @BLACKSWANFound

2K Followers 417 Following Foundation supporting Research on #RareDiseases and #OrphanDiseases world wide @REACT_Community #RAREvolution #REACTCongress

Advancing world-class health services and policy research and training on issues that matter to Canadians. Our annual health policy conference: #CHSPR2024

UBC Centre for Health.. @CHSPR

3K Followers 704 Following Advancing world-class health services and policy research and training on issues that matter to Canadians. Our annual health policy conference: #CHSPR2024

🇨🇦 CIHR-SPOR Network | Making the future brighter for children with brain-based developmental disabilities & their families. En français: @BRILLEnfant

CHILD-BRIGHT Network @ChildBrightNet

3K Followers 1K Following 🇨🇦 CIHR-SPOR Network | Making the future brighter for children with brain-based developmental disabilities & their families. En français: @BRILLEnfant

CAUSES @CAUSES_genomics

297 Followers 589 Following #Genomic #sequencing for children who have complex, undiagnosed disorders at BC Children's & Women's Hospital.

Epidemiologist @UBC interested in Decision Sciences at clinical & policy levels, with application in respiratory diseases. Gradually moving to msafavi.bsky.soci

Mohsen Sadatsafavi @Mo_Safavi

781 Followers 511 Following Epidemiologist @UBC interested in Decision Sciences at clinical & policy levels, with application in respiratory diseases. Gradually moving to msafavi.bsky.soci

adMare’s Vision is Canadian life sciences leading the world. We are on a mission to realize this vision by building companies, ecosystems and talent.

adMare BioInnovations @adMare_Bio

5K Followers 2K Following adMare’s Vision is Canadian life sciences leading the world. We are on a mission to realize this vision by building companies, ecosystems and talent.

Providence Health Care is one of Canada's largest faith-based health care organizations operating 17 sites in Vancouver, BC, Canada.

Providence Health Car.. @Providence_Hlth

11K Followers 2K Following Providence Health Care is one of Canada's largest faith-based health care organizations operating 17 sites in Vancouver, BC, Canada.

CanadianHealthPolicy @CHPI1

8K Followers 371 Following Canadian Health Policy Institute (CHPI). Information and ideas for a better health system.

An evidence-based, values-driven organization dedicated to strengthening & preserving Canada's publicly-funded health care system. Join today!

Canadian Doctors for .. @CdnDrs4Medicare

12K Followers 5K Following An evidence-based, values-driven organization dedicated to strengthening & preserving Canada's publicly-funded health care system. Join today!

CFCanadaWalk @CFCanadaWalk

1K Followers 915 Following The Walk to Make Cystic Fibrosis History will take place on Sunday, May 28, 2017.

Healthcare Communications and Social Media (#hcsm), the first global health care Twitter chat. Moderated by @danamlewis. Started Jan 2009. Sunset January 2018.

HealthSocMed | #hcsm @HealthSocMed

28K Followers 6K Following Healthcare Communications and Social Media (#hcsm), the first global health care Twitter chat. Moderated by @danamlewis. Started Jan 2009. Sunset January 2018.

PKU is a place where you can get information about PKU and connect with others in the PKU community. This page is sponsored by BioMarin Pharmaceutical Inc.

PKU @pkuawareness

1K Followers 166 Following PKU is a place where you can get information about PKU and connect with others in the PKU community. This page is sponsored by BioMarin Pharmaceutical Inc.

We support The Hospital for Sick Children @sickkidsnews in Toronto, Canada. #PrecisionChildHealth is here. 🔮

#SKHealTheFuture #SickKidsVS

SickKids Foundation @sickkids

55K Followers 7K Following We support The Hospital for Sick Children @sickkidsnews in Toronto, Canada. #PrecisionChildHealth is here. 🔮 #SKHealTheFuture #SickKidsVS

MaRS Discovery District supports Canada’s most promising startups — helping them grow, create jobs and solve society’s greatest challenges.

MaRS @MaRSDD

90K Followers 3K Following MaRS Discovery District supports Canada’s most promising startups — helping them grow, create jobs and solve society’s greatest challenges.

Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.

Cystic Fibrosis Found.. @CF_Foundation

31K Followers 3K Following Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.

National health charity working to help Canadians with cystic fibrosis live longer, healthier lives.

En français : @fkcanada

CysticFibrosisCanada @CFCanada

6K Followers 1K Following National health charity working to help Canadians with cystic fibrosis live longer, healthier lives. En français : @fkcanada

✩AmieLove✩ @Amielove7

1K Followers 1K Following ✩ I love my Ohana* , I love my dog , I love traveling , I love Disney, I love The Simpsons ✩Ontario, Canada

Breathe better with salt therapy! Halosense Inc provides drug-free treatment in all breathing conditions. https://t.co/gvns1pL6Jl

Home Salt Therapy | H.. @HomeSaltTherapy

2K Followers 5K Following Breathe better with salt therapy! Halosense Inc provides drug-free treatment in all breathing conditions. https://t.co/gvns1pL6Jl

James van Riemsdyk @JVReemer21

225K Followers 1K Following New Jersey raised. Instagram- jvanriemsdyk

Advocate for humanitarian causes, especially access to lifesaving medicines for the people who need it most. Member of GRAN, Oomama and GASP

Irene Clarke @IreneClarke3

266 Followers 559 Following Advocate for humanitarian causes, especially access to lifesaving medicines for the people who need it most. Member of GRAN, Oomama and GASP

Norm Kelly @norm

564K Followers 657 Following Mrs. Kelly's Favourite Son

I care about improving the quality of life of those less privileged. Participant of GRANDMothers advocacy. Enjoy Racewalking, Theatre, Travel and Food.

Angela Quinlan @angelaquinlan1

247 Followers 408 Following I care about improving the quality of life of those less privileged. Participant of GRANDMothers advocacy. Enjoy Racewalking, Theatre, Travel and Food.

#Intuitive Life Strategist|Featured on #OWN|#Speaker|#Author|'F-Word'Specialist:Helping People Face Fear & Learn #forgiveness #emotionalintelligence #resilience

Di Riseborough @DiRiseborough

4K Followers 3K Following #Intuitive Life Strategist|Featured on #OWN|#Speaker|#Author|'F-Word'Specialist:Helping People Face Fear & Learn #forgiveness #emotionalintelligence #resilience

Yoni Freedhoff🎗️ @YoniFreedhoff

68K Followers 16K Following Associate Professor Family Medicine/Dad/Not Your Good Jew/עם ישראל חי

@CFCanada, Toronto @CFCanToronto

2K Followers 2K Following Toronto & District Chapter of Cystic Fibrosis Canada works to help Canadians with cystic fibrosis live longer, healthier lives.

Kathleen Wynne @Kathleen_Wynne

239K Followers 2K Following Mom, Grandma, Concerned citizen

Jo Pfoh @jopfoh

4K Followers 5K Following Mom, cat lover,writer, vegetarian, lover of all creatures instagramjojopfoh /pinterest jopfoh

The Bewitchin' Kitche.. @bewitchinkitch

15K Followers 7K Following Creator The Bewitchin' Kitchen™ + @randanutrition. Sharing healthy recipes that showcase "balance" and everyday attainability with nutrition. Disney addict.

myblocktyler @myblocktyler

16K Followers 5K Following You're only as pretty as how you treat others. 📸 IG: @myblocktyler

President & CEO Unison: For Generations 50+ Kerby Centre/Veiner Centre/Meals on Wheels Medicine Hat - Husband, Father, Grandfather

Larry Mathieson @LarryMathieson

128K Followers 133K Following President & CEO Unison: For Generations 50+ Kerby Centre/Veiner Centre/Meals on Wheels Medicine Hat - Husband, Father, Grandfather

Chris Boddy @TPSChrisBoddy

42K Followers 17K Following Retired Inspector at Toronto Police Service.

Cystic Fibrosis Canada - Calgary & Southern AB Chapter. Raising funds and awareness to #gofurtherfor Albertans with cystic fibrosis.

Cystic Fibrosis Calga.. @CFCalgary

1K Followers 839 Following Cystic Fibrosis Canada - Calgary & Southern AB Chapter. Raising funds and awareness to #gofurtherfor Albertans with cystic fibrosis.

Advisor to startups. Freelancer. Global Speaker. Founder @LeadershipData. Top influencer in #BigData #DataScience #AI #IoT #ML #B2B. PhD Astrophysics @Caltech

Kirk Borne @KirkDBorne

447K Followers 6K Following Advisor to startups. Freelancer. Global Speaker. Founder @LeadershipData. Top influencer in #BigData #DataScience #AI #IoT #ML #B2B. PhD Astrophysics @Caltech

rap stars @rapstarsca

17K Followers 19K Following

Grateful Canadian, Transplanted Maritimer 2-7pm @Move100Ottawa @iHeartRadioCA 📻 Emcee/voice overs/actor @MensourAgency #MentalHealth 🌈 Ally/ views all mine

Katherine Dines @KatherineDines

11K Followers 6K Following Grateful Canadian, Transplanted Maritimer 2-7pm @Move100Ottawa @iHeartRadioCA 📻 Emcee/voice overs/actor @MensourAgency #MentalHealth 🌈 Ally/ views all mine

CanPKU is a non-profit association, dedicated to providing information and support dealing with low protein metabolic disorders such as HCU, MSUD, PKU and UCDs.

CanPKU+ @canpku

939 Followers 273 Following CanPKU is a non-profit association, dedicated to providing information and support dealing with low protein metabolic disorders such as HCU, MSUD, PKU and UCDs.

Aurelia Cotta @AureliaCotta

7K Followers 6K Following The Personal is Political. Parenting after infertility and loss, being a #prochoice #adoptee #LPC #onpoli #adhd #mentalhealth #covid19 #cdnpoli #COVID19vaccine

Humanitarian junkie,TEDx speaker,changing the world with he(art)Founder @skateboard4hope Act like you give a fuck https://t.co/vIP4NsgtsA

Betty Esperanza @esperanza4hire

1K Followers 3K Following Humanitarian junkie,TEDx speaker,changing the world with he(art)Founder @skateboard4hope Act like you give a fuck https://t.co/vIP4NsgtsA

couragesings @couragesings

3K Followers 1K Following Tweeting about variety of things: #PtExp #PtVoice, Arts, Photography, #MentalHealth @couragesings.bsky.social

LivingInAPinkBubble @edoetsch1

150 Followers 207 Following Just a small town girl, working in a Thirty-One world! #girlboss #ceo

Reading. Writing. Music. Humor. Stamping. Scrapbooking. Creativity. IH mama raising awareness in hope of a cure for my youngest girl.
JESUS. SCRK. LOVE.

Pia B K @SCRKmom1186

227 Followers 696 Following Reading. Writing. Music. Humor. Stamping. Scrapbooking. Creativity. IH mama raising awareness in hope of a cure for my youngest girl. JESUS. SCRK. LOVE.

Patients need access to information. Advocate for patient inclusion in health care, research, governance. PAN co-founder, RA,Sjogrens. MedX ePatient Scholar

Annette McKinnon @anetto

11K Followers 11K Following Patients need access to information. Advocate for patient inclusion in health care, research, governance. PAN co-founder, RA,Sjogrens. MedX ePatient Scholar

2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)

Rare Disease Day US @RareDayUS

8K Followers 1K Following 2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)

Building a social enterprise to pay people w/ disabilities.

Let's Go Fitness @letsgofitness2 an online fitness community for people with #diverseabilities

🏀

Keegan Johnson @keeganj

2K Followers 342 Following Building a social enterprise to pay people w/ disabilities. Let's Go Fitness @letsgofitness2 an online fitness community for people with #diverseabilities 🏀

retired #PSW #caregiver, ❤ #alzchat #seniorsHealthcare #ltc #onhealth @NatriceR@masto.ai

𝓝𝓪𝓽𝓻𝓲�.. @NatriceR

15K Followers 17K Following retired #PSW #caregiver, ❤ #alzchat #seniorsHealthcare #ltc #onhealth @[email protected]

RareDiseaseFdn @rarediseasefdn

5 years ago

WHO ELSE IS WATCHING????!!!!???? We are hooked and inspired!! Join our community of detectives by registering for free on our website. cnet.com/news/netflix-s…

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CORE UBC @CORE_UBC

5 years ago

Congratulations to Dr. Mohsen Sadatsafavi who has assumed the role of Associate Director Research at CORE, and Dr. Mary De Vera who has assumed the role of Associate Director Education at CORE. Looking forward to the exciting research and training opportunities to come!

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CORE UBC @CORE_UBC

5 years ago

Another CORE Post Doc Opportunity! Postdoctoral Fellowship in Data Science for Neurological Diseases, find out more here: core.ubc.ca/careers/

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UBC Pharm Sci @ubcpharmacy

5 years ago

Career Opportunity: Postdoctoral Fellowship in Data Science for Neurological Diseases. Learn more - pharmsci.ubc.ca/about/careers/… @CORE_UBC #UBC

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CORE UBC @CORE_UBC

5 years ago

CORE is hiring a Post Doc for the Economic Evaluation of Precision Medicine for Genetic Diseases - view the posting here: postdocs.ubc.ca/positions/1186

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Centre for Advancing Health @Advancinghlth

5 years ago

Do you have your ticket yet? Early bird pricing only available for a short time! Join us for our upcoming workshop, led by @ehsan7x, that will address application of propensity score methods in complex survey data analysis. Pls RT and share! eventbrite.com/e/guide-to-app…

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TELUS Health @TELUSHealth

5 years ago

We are talking orphan drugs for rare diseases: the need to innovate to enable access with @ldlynd Professor and Director, Collaboration for Outcomes Research and Evaluation @CORE_UBC. #HealthBenefitsTrends

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CBC Radio's Ideas @cbcideas

5 years ago

Canadians are confronted by a recurring question: how do we efficiently run a system that is both financially viable, but also fair to the most number of Canadians? cbc.ca/1.4988249 @CIHR_IRSC @RareDxResearch @CORE_UBC @GlobalRepCentre

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CORE UBC @CORE_UBC

5 years ago

New pub!!

Mohsen Sadatsafavi @Mo_Safavi

5 years ago

#PrecisionMedicine requires precision understanding of disease heterogeneity. #RESP brilliant PhD student @KateMaJohnson contributes to our better understanding of heterogeneity in COPD symptoms. @CanRespirResNet @ubcpharmacy @CORE_UBC #COPD dovepress.com/heterogeneity-…

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CORE UBC @CORE_UBC

6 years ago

New CORE pub! Assessment of atrial fibrillation patients' education needs from patient and clinician perspectives: A qualitative descriptive study. Salmasi S, Kwan L, MacGillivray J, Bansback N, De Vera M, Barry A, Harrison M, Andrade J , Lynd L, Loewen P. bit.ly/2FvqsQb

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CORE UBC @CORE_UBC

6 years ago

New editorial form CORE's Peter Zed: Deprescribing proton pump inhibitors. Can J Hosp Pharm 2018;71:291-2. bit.ly/2PZT4VF

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CORE UBC @CORE_UBC

6 years ago

Congratulations to CORE trainee Shahrzad Salmasi who received the CIHR Institute of Circulatory and Respiratory Health travel award for her poster at the Canadian Cardiovascular Congress- the largest gathering of cardiovascular and allied health professionals in Canada!

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CORE UBC @CORE_UBC

6 years ago

Town Hall on Rare Diseases TONIGHT!! Tickets are still available here: bit.ly/2OKsO1F. Everyone is welcome to come!

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Global Reporting Centre @GlobalRepCentre

6 years ago

TONIGHT: The GRC is hosting a free Town Hall with @RareDxResearch and @cbcideas to discuss our project on rare diseases in Canada, Million Dollar Meds - register for tickets and learn more here: bit.ly/2pNxwNj

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Deb Purcell @purcelldeb

6 years ago

Going to be on CBC Radio News tomorrow morning at 7:50am PST talking about Trey and rare diseases in Canada all based on MillionDollarMeds.com in case you can and want to tune in!... milliondollarmeds.com/video.html#!/v…

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Deb Purcell @purcelldeb

6 years ago

Going to be on CBC Radio News tomorrow morning at 7:50am PST talking about Trey and rare diseases in Canada in case you can and want to tune in!

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Larry Lynd @ldlynd

6 years ago

Tickets are going fast. Come out and join the discussion, and get to meet Paul Kennedy from CBC in person. If you can't make it, please be sure to join the Live Stream, and contribute to the discussion through Twitter or FaceBook Live discussion board!

Global Reporting Centre @GlobalRepCentre

6 years ago

Did you know that the Canadian Charter of Rights and Freedoms doesn’t include the right to have access to a universal healthcare plan? That a publicly funded national pharmacare plan may benefit Canadians and save money? Join our Town Hall event on Oct. 23 bit.ly/2pNxwNj

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Global Reporting Centre @GlobalRepCentre

6 years ago

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Global Reporting Centre @GlobalRepCentre

6 years ago

On Oct 23, we're hosting a town hall on rare diseases bringing together a diverse panel of speakers to discuss the challenges of providing costly drugs for Canadians suffering from rare diseases. The public town hall is hosted by Paul Kennedy of @cbcideas bit.ly/2A6TsJ4

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Global Reporting Centre @GlobalRepCentre

6 years ago

Did you know that approximately 1 in 12 Canadians suffer from 1 of over 7,000 different rare diseases? Join us for free at our Town Hall w/ @RareDxResearch on Oct. 23 to participate in conversation with leaders in the rare disease space bit.ly/2A6TsJ4 #MillionDollarMeds