CORD
@raredisorders
CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
ID: 1921062409
http://raredisorders.ca 30-09-2013 19:14:21
3,3K Tweet
5,5K Followers
698 Following
kady o'malley
@kady
political reporter/parliamentary correspondent at large. proud target of partisan vitriol from all sides of political spectrum. if twitterjailed check @altkady
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Innovative Medicines Canada
@innovativemeds
National association representing Canada’s research-based pharmaceutical industry. Dedicated to improving health through the discovery of medicines & vaccines.
Amy Gaviglio
@agavig
Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Muscular Dystrophy Canada
@md_canada
MDC's mission is to help people with neuromuscular disorders live life on their own terms. #WalkRollMDC #MuscularDystrophy FR: @Action_Musclee
Andrew Retfalvi
@retfalvi
VP Health & Life Sciences @GPAinsights. Board director @CAHR_ACRSS. Maritimer at heart; fan of country music, strong IPAs and the @NHLFlames
CIHR
@cihr_irsc
Canadian Institutes of Health Research | En français : @IRSC_CIHR | Terms and Conditions: bit.ly/1cqfGa0
Yoni - יוני (and Rebecca too)
@primary_immune
Human. Jew. Israeli. הודו לה' כי טוב כי לעולם חסדו Closed on Shabbat
Healthy Debate
@healthydebate
Healthy Debate publishes journalism about health care in Canada. Free to read. Free to republish. Find us on BlueSky: healthydebate.bsky.social
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Gail Attara 🇨🇦
@gail_attara
find me @gailattara.bsky.social; Healthcare advocate. @GISociety; mother of 4, grandmother of 7; writer; painter (see header).
MitoCanada
@mitocanada
Offering hope to those living with – or at risk of developing – mitochondrial disease through support, education, awareness and research. 💚 #MitoCanada
CoalitionCancer
@coalitioncancer
La Coalition priorité cancer au Québec a été créé en 2001 pour donner une voix forte aux personnes touchées par le cancer. / Quebec Cancer Coalition
McKesson Canada
@mckessonca
Advancing health outcomes for all | Faire progresser la santé pour tous
Scleroderma Society of Ontario
@scleroderma_sso
We are committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma. #scleroderma #autoimmunedisease
Dr. Adil Shamji 🇨🇦
@shamjiadil
MPP for Don Valley East | Emergency Physician | Husband | Dog Dad
Chrystia Freeland
@cafreeland
Liberal candidate in University-Rosedale. Proud Canadian, mother and wife. // Candidate libérale dans University-Rosedale. Fière Canadienne, mère et épouse.
André Picard
@picardonhealth
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.
Research Canada
@researchcda
A national alliance dedicated to advancing health research & innovation. Working for all Canadians, we engage all sectors to build support for our ecosystem.
Catherine Stratton, MPH
@cathsmstratton
Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafdn #KnowledgeTranslation #RareDisease #Pain #Disability
CEDSA
@cedsa_acsde
CEDSA is the only national charity for Canadians impacted by ectodermal dysplasia syndromes. Helping families, helping people.
Kelly Meissner
@angelkatem
I'm an advocate for inclusion, accessibility, and equity for all, helping families on their journey through disability. Views are my own.
Beacon for Rare Diseases
@rarebeacon
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
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Mayo Clinic Center for Individualized Medicine
@mayocliniccim
The Center for Individualized Medicine integrates the latest in genomic science, precision medicine into clinical practice at @MayoClinic. RTs ≠ endorsements.
Upside Foundation
@sharetheupside
We help scaling Canadian startup founders make a difference in the world by giving back to the charities of their choice through donating equity instead of cash
LFS Association
@lfsassociation
We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome, a hereditary cancer predisposition syndrome.
Riyad
@raelbard
Pfizer Canada
@pfizerca
Impacting the health of Canadians / Avoir un impact sur la santé des Canadiens. Commenting Policy / Politique sur les commentaires spr.ly/6009DMpRL
Christine
@christinewngf
Tweets by Christine White, President. #raredisease @NGFCanada
Canada's CPHO
@cpho_canada
Official account of Canada's Chief Public Health Officer, Dr. Theresa Tam. Terms of use: bit.ly/pG7JNz Français: @ACSP_Canada
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
Care4Rare Canada
@c4rcanada
Canada-wide research group improving diagnostic care for people with rare genetic diseases. #EndTheDiagnosticOdyssey
susa benseler
@susabenseler
paediatrician, rheumatologist & researcher4kids, views and opinions are my own, passionate about #CHI #OneChildEveryChild
Simons Searchlight
@s_searchlight
Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: bit.ly/SFARI_BASE
Lisa Machado
@cdncmlnetwork
Lived experience advocate, journalist, founder cmlnetwork.ca, executive producer Healthing.ca
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
BioCanRx - Canada's Immunotherapy Network
@biocanrx
A Network of Centres of Excellence uniquely positioned to help Canada & the world accelerate the development of effective #cancer #immunotherapy treatments
beth Vanstone
@bethdenniss
Podcast Producer @TheBonnellFoundation Liaison @UofT Pharmacology Dep Former Director @CFGetLoud , Advocate for Cystic Fibrosis and the rare disease community.
CIHR-ICR | IC-IRSC
@cihr_icr
CIHR Institute of Cancer Research | Institut du cancer des IRSC Views expressed are our own | Les opinions exprimées sont les nôtres
ANDRE MARIN LAW PROFESSIONAL CORPORATION
@ont_andremarin
Ombudsman of Ontario (2005-2015). Lawyer and anti-corruption expert operating as [email protected]. Fun continues. Proud owner of MX5 2024 Miata ND3.
Chris Lewis Essex
@chrislewisessex
Chris Lewis: CPC - Essex; This account is not monitored, please reach out to the office for assistance.
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
CureSPG50
@curespg50
To help children affected by the SPG50 disease
Tatton Brown Rahman Syndrome (TBRS) Community
@tbrscommunity
The Tatton Brown Rahman Syndrome Community supports research and educates individuals with TBRS and their families, friends, and service providers.
CIHR-IHDCYH
@cihr_ihdcyh
The Institute of Human Development, Child and Youth Health (#IHDCYH) @CIHR_IRSC supports research to improve the health of children, youth and families.
CF Get Loud
@cfgetloud
A resource for patients and their networks to GET LOUD for access to medications in Canada for cystic fibrosis patients. Speak up to help save Canadians with CF
NeuroCRU
@neurocru
Clinical Research Unit (CRU) at The Neuro - a leading centre affiliated with McGill | Unité de recherche clinique du Neuro, un centre de pointe affilié à McGill
CIHR-IMHA Community
@cihr_imha
The CIHR-Institute of Musculoskeletal Health & Arthritis (IMHA) mandate is research that enhances active living, mobility, MSK health, oral health & skin health
FlaminiaRDI
@flaminiardi
Bamberg Health
@bamberghealth
Empowering the future of healthcare [email protected]
Resilient Healthcare Coalition
@rh_coalition
We are a collaboration of health system partners providing the leadership, insights and support required to build a more resilient Canadian healthcare system.
Colorectal Cancer Resource & Action Network
@ccranorg
CCRAN is the most trusted colorectal cancer resource & action network in Canada. It's our mission to provide support, education, & advocacy.
Rarity Life
@raritylifemag
A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
Together for Rare Diseases
@together4rd
Together for Rare Diseases is a multi-stakeholder alliance supporting ERNs and industry to collaborate for the benefit of the rare disease community
Patient Voice
@patientvoiceca
Health stories, well told.
IMPaCT
@impactrials
We are a community of mentors and partner organizations dedicated to Increasing capacity for Maternal and Paediatric Clinical Trials (IMPaCT) in Canada
Canadian Rare Disease Network (CRDN)
@canadianrdn
Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Brigitte Nolet
@brig_nolet
Tri sector leader who is passionate about solving the complexities of healthcare for the future. All views are my own.
IQVIA
@iqvia_global
Leading global provider of advanced analytics, technology solutions and clinical research services to the life sciences industry through #ConnectedIntelligence.
Alanna | Where Are My Pillows
@wampillows
🇨🇦🇺🇸 autoimmune encephalitis survivor 🧠 rare disease patient advocate
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Stephanie Michaud
@smichaudbcrx
President & CEO, BioCanRx
BeOne Medicines
@beonemedicines
We’re a global oncology company bringing innovative medicines & making them more accessible to patients worldwide. Community guidelines: bit.ly/3fQxtKY
GenCOUNSEL
@gencounsel_ca
GenCOUNSEL Project -Optimization of genetic counselling for clinical implementation of genome-wide sequencing. bcchr.ca/GenCOUNSEL
Mary Wang
@marywangcm
#RareDiseases, global #access; care, diagnosis, medicines. My own tweets