jillianengages.bsky.social @JillianEngages
Patient partnership in research. Team Lead, #PatientPartnership for @CIHR_IG. Genetics. #RareDisease. JIA. Disabled. Opinions mine & not that of my employer. Joined February 2022-
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Exciting News: The Canadian MPS Registry launches today! Do you or your family member have mucopolysaccharidosis (MPS)? Do you want to join The Canadian MPS Registry? Visit mpsregistry.ca to learn more and join! For questions, please contact us at [email protected]
A question for anyone in the #PatientEngagement/#PPI community. I'm helping plan a conference that includes #PatientPartners as speakers, moderators, poster judges, etc. What supports besides payment of expenses & compensation have you found helpful at these events? /1
1/ We are now inviting applicants to submit an EOI for the waiting list, especially for the in-person option to be held in Halifax. The original deadline for EOI submission was April 30th and applications received before that time will be prioritised.
1/ We are now inviting applicants to submit an EOI for the waiting list, especially for the in-person option to be held in Halifax. The original deadline for EOI submission was April 30th and applications received before that time will be prioritised.
We are looking for young Canadians between 12-25 to join our Youth Advisory Council! Share your voice with Scientific Director @DrCChambers to help advise the CIHR Institute of Human Development, Child and Youth Health. Apply by May 21: cihr-irsc.gc.ca/e/51876.html
Join us to learn from @BethPotter4 and @pchakottawa on the role of patient registries in rare disease clinical trials. 🌟 Hosted by IMPaCT and RareKids-CAN 🌟 Don’t miss out, register today! bit.ly/3We73ZA
Attention, Halifax-based research teams! Do you want to learn about #PatientEngagement from a great team of #PatientPartners? Apply to participate in this workshop by end of day tomorrow (April 30). ubc.ca1.qualtrics.com/jfe/form/SV_5n…
Attention, Halifax-based research teams! Do you want to learn about #PatientEngagement from a great team of #PatientPartners? Apply to participate in this workshop by end of day tomorrow (April 30). ubc.ca1.qualtrics.com/jfe/form/SV_5n…
Reminder! Join us for the Patient Engagement 101 Workshop taking place on June 19, 2024 from 1-3 pm AT in Halifax, NS or online. Complete an expression of interest statement by April 30th, 2024. 👉cihr-irsc.gc.ca/e/27297.html#a5
Reminder! Join us for the Patient Engagement 101 Workshop taking place on June 19, 2024 from 1-3 pm AT in Halifax, NS or online. Complete an expression of interest statement by April 30th, 2024. 👉cihr-irsc.gc.ca/e/27297.html#a5
Calling all research trainees looking to learn more about patient engagement in health research! We are happy to announce the Patient Engagement 101 Workshop taking place on June 19, 2024, from 1-3 pm AT in Halifax, NS or online. @CIHR_IMHA cihr-irsc.gc.ca/e/27297.html#a5.
The countdown has started! ⌛️ #ProDGNEmeeting2024 is almost here! You're not able to join us in #Sardinia? We have you covered! Register now and join us online to hear from researchers patients, stakeholders 🌍involved in #GNEMyopathy & #RareDiseases 👉urly.it/3_8gw
Learn about the basics of drug discovery and clinical trials in this 1 hour webinar with Dawn Richards @TO_dpr, PhD, Director of Patient and Public Engagement at @clinicaltrialON on April 27, 2024 from 1:00 pm to 2:00 pm EDT. Register using this link buff.ly/4cSG3Vm
I'm excited to team up with @CIHR_IMHA for this workshop in Halifax! There are a few virtual spots available, too! See more details: cihr-irsc.gc.ca/e/27297.html#a5
I'm excited to team up with @CIHR_IMHA for this workshop in Halifax! There are a few virtual spots available, too! See more details: cihr-irsc.gc.ca/e/27297.html#a5
We are looking for a research associate with expertise in patient-engagement in research! This is a maternity leave cover position, with opportunities to continue with @Team_Blueprint beyond the 15 month contract. Come join our dynamic team: ohri.ca/careers/Detail…
👀Recording available! Missed out on joining us live or want to play it back? Check out the recording from the first in our 2024 webinar series: Demystifying the research process from patient partner perspectives youtube.com/watch?v=QpaX-Y…
A new study co-led by Dr. Maryam Oskoui @RIMUHC1 has identified genes that may be partially responsible for the development of cerebral palsy. muhc.ca/news-and-patie…
We are hiring at The Hospital for Sick Children: Program Manager, Knowledge Mobilization and Patient Engagement, CHILD Study. linkedin.com/jobs/view/3865…
Join us for our first IMPaCT webinar focused on youth and family engagement in pediatric and perinatal trials. Hear from IMPaCT parent partner Yan and youth partner Jenna and from patient engagement specialists Maureen and Dawn! Register here: bit.ly/3Vs2Z7C
Looking forward to giving this seminar about my doctoral research on #RareDisease #PatientRegistries and how the principles of #PatientEngagement are central to #RareDisease research! Register: ca01web.zoom.us/meeting/regist…
Reminder! Register for our next CPD-accredited webinar, Updates on newborn screening for #SpinalMuscularAtrophy and #PompeDisease, hosted together with @MD_Canada. 📅Tue Apr 2, 2024 🕝5:00pm ET 🔗Register at: bit.ly/NMDNBS2024 #LetsTalkNMD
For #WorldyOungRheumaticDiseasesDay @WORDDay_org, we are raising awareness for youth with rheumatic diseases to encourage early diagnosis and treatment. Check out what we learned from the Make Rheum For Youth Survey buff.ly/4adYimi
Today is World Young Rheumatic Diseases (WORD) DAY! Explore Dr. Marshall and the team’s research on Juvenile Idiopathic Arthritis and discover their innovative approach to patient partnership and capacity building! @Marshall_HEcon #JIA #WORDDay2024 cihr-irsc.gc.ca/e/53641.html
Dr. Christine Chamber.. @DrCChambers
17K Followers 9K Following Busy mom of 4, PhD Psychologist, Scientific Director @CIHR_IHDCYH, Scientific Director @KidsInPain, Professor & Tier 1 @CRC_CRC in Children's Pain @DalhousieU.
Dr. Dawn Richards, Ph.. @TO_dpr
3K Followers 2K Following Living life with #Arthritis along for the ride. Posting & passionate about #Research, arthritis, #PatientEngagement. Opinions my own.
Rachel Martens ♿️.. @RaeofSunshine79
5K Followers 5K Following Research Knowledge Broker, speaker, knowledge mobilization, cancer, childhood disability, rare disease, spoonie, coffee drinker. Opinions are my own.
Stuart G Nicholls (Po.. @StuartGNicholl1
1K Followers 3K Following Pragmatic trials, patient engagement, research ethics. From Leyland (Lancashire) to Ottawa (Ontario) https://t.co/blXTqodVD1…
Rae Martens -Family E.. @FERProgram
1K Followers 1K Following We train, mentor, and mobilize today’s advocates, champions, and leaders in family engagement.
Laurie Proulx @ProulxLaurie
2K Followers 2K Following Lives with Juvenile Idiopathic Arthritis, all about community & patient engagement, consultant, knowledge broker, health and social policy
sue robins (she/her) @suerobinsyvr
8K Followers 5K Following Senior Partner @birdcomm | Mama Bear | Former Cancer-Haver | Patient Engagement Consultant |
Maureen Smith @Maureenchats
520 Followers 207 Following Passionate patient partner, rare disease advocate, Adjunct Professor @UofT_dlsph, Teacher at ❤️@INFORMRARE @CochraneConsumr @EvidenceComm @SPORAlliance
AbSPORU @AbSPORU
990 Followers 596 Following The Alberta SPOR SUPPORT Unit is dedicated to the integration of research into care, so that patients receive the right care at the right time.
CIHR-IMHA Community @CIHR_IMHA
1K Followers 1K Following The CIHR-Institute of Musculoskeletal Health & Arthritis (IMHA) mandate is research that enhances active living, mobility, MSK health, oral health & skin health
Dr. Andrea C. Tricco @ATricco
4K Followers 3K Following Canada Research Chair, Director @ Unity Health Toronto, Associate Professor @ University of Toronto, Co Editor in Chief @ Journal of Clinical Epidemiology
Virginia McIntyre �.. @Virginia_McI
2K Followers 689 Following President @Peoplepain |Chair @CanadianPain PWLE com | Passionate #Osteoporosis #ChronicPain #PatientInclusion | Public Speaker Tweets/views my own| #StandBy🇺🇦
Garrett Barry @garrettsbarry
862 Followers 1K Following MD FRCPC Anesthesiologist | Regional Anesthesia & Acute Pain | @CAS_RegAnes | @CAS_History
CIHR-IHDCYH @CIHR_IHDCYH
4K Followers 2K Following The Institute of Human Development, Child and Youth Health (#IHDCYH) @CIHR_IRSC supports research to improve the health of children, youth and families.
Professor Karim Khan .. @KarimKhan_IMHA
12K Followers 8K Following Scientific Director, working with great team @ CIHR-Institute of Musculoskeletal Health & Arthritis. My job: servant of research communities. Not a GoC account
Larry Mróz @DrMroz@m.. @DrMroz
2K Followers 2K Following Research Services @BCSUPPORTUnit @HlthResearchBC #LearningHealthSystems #PatientEngagement #Nutrition #MensHealth https://t.co/KHv7UWKE4v…
DalAnesthesia @DalAnesthesia
772 Followers 367 Following Department of Anesthesia, Pain Management & Perioperative Medicine @HealthNS @DalMedSchool @DalMedNB @DalhousieU @IWKHealth @HorizonHealthNB
Dr. Perri Tutelman @DrPerriTutelman
5K Followers 4K Following Psychologist | Postdoc @AHS_CancerCare & @UCalgaryPsyOnc | Psychosocial Oncology & Pain | She/her | Views my own | #AYACancerPSP
Isabel Jordan (She/He.. @seastarbatita
6K Followers 2K Following Parent. Patient Partner. Feminist. Nerd. I am congruent. #PatientsIncluded #ItDoesntHaveToHurt (Avatar from @blackmudpuppy) [email protected]
Manoj Lalu @ManojLalu
2K Followers 1K Following MD, PhD, FRCPC. Ottawa Anesthesia + research on research, translation, patient engagement. Co-lead of @Team_Blueprint. Member of @OttAnesthesia & @_Journalology
Dr. Deborah A Marshal.. @Marshall_HEcon
479 Followers 512 Following Health economics and health services research team.
Andrea Cross @cross_acc
534 Followers 489 Following Assistant Professor, Department of Pediatrics, McMaster University
Childhood Arthritis &.. @cabc2024
17 Followers 38 Following Welcome to the official page for the Childhood Arthritis & Beyond Conference 2024 presented by UCAN
CIHR-III | IRSC-IMII @CIHR_III
204 Followers 319 Following CIHR Institute of Infection and Immunity (III) | Institut des maladies infectieuses et immunitaires (IMII) des IRSC (IMII)
ProDGNE @ProDGNE
121 Followers 162 Following #ProDGNE unifies European and Canadian efforts to develop a novel #prodrug as a therapeutic approach for #GNEMyopathy, a #rare 🧬 muscle disease #EJPRD #JTC2020
Canadian Association .. @PorphyriaCanada
95 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Arthritis Broadcast N.. @ArthritisNetwrk
6K Followers 2K Following Arthritis Broadcast Network: All your arthritis news and information. All the time. Powered by @ACEJointHealth & @Arthritis_ARC
Community-Based Resea.. @CbrcResearch
2K Followers 945 Following Advancing community-based research excellence in Canada by strengthening partnerships, bridging capacity, mobilizing knowledge, and championing CBR
OrthoEquity: Inclusiv.. @EDISurgery_PSP
68 Followers 281 Following Our James Lind Alliance Priority Setting Partnership aims to identify and prioritize the top ten unanswered questions about diversity in orthopaedic surgery.
Where Are My Pillows @wampillows
808 Followers 977 Following 🇨🇦🇺🇸 autoimmune encephalitis survivor 🧠 rare disease patient advocate
Canadian Rare Disease.. @CanadianRDN
229 Followers 595 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
drloritucker @LoriBTucker1
587 Followers 434 Following caring for kids with arthritis and rheumatic disease. research making a difference. creative communicator. love my family, good cup of coffee and sunny days.
CATCH Cohort Canada @earlyarthritis
1K Followers 2K Following A national early #arthritis cohort following people with new onset inflammatory or #rheumatoid arthritis to watch their disease course & response to treatments.
Survivor Network CA @survivornetca
8K Followers 8K Following Canadian Cancer Survivor Network | Promoting the very best standard of care, support, follow up and quality of life for cancer patients and survivors.
Diana Nakib @DianaNakib
109 Followers 167 Following PhD(c) | Transplantation Immunology in the MacParland Lab | Department of Immunology, UofT
Éle Quinn @ele_quinn
251 Followers 710 Following PhD student working on #ThePeoplesReview (Follow us here - @thepeoplesrev) | Occupational Therapist | Sanctuary Runner - @SanctuaryRunGal | she/her
Janelle Bowden @JanelleBowden
2K Followers 2K Following Muddling through. Passionate abt #medicalresearch #clinicaltrials #technology #innovation #patientvoice #ppi #patientengagement #womeninstem @AccessCR she/her
Kaylee Byers, PhD @kaylee_byers
1K Followers 2K Following One Health | Wildlife | Comms | Deputy Director BC @cwhcrcsf | Assistant Prof @sfu_fhs + @pippsbc | Host of Nice Genes! podcast | Cofounder @nerdniteyvr she/her
NHS SW Genomic Medici.. @SWGenomics
1K Followers 2K Following Improving Healthcare Through Genomics - working together to embed Genomics into standard care for patients and families across the South West.
HLAnne PhD @Halpingal
2K Followers 2K Following Account is a hot mess of HLA, immunogenetics, ABO, transplant, healthcare, laboratory medicine, education, politics, and YEG (she/her). Living kidney donor-2022
Parvez Miah (Braille .. @ParvezMiah2649
204 Followers 2K Following 5 years of Volunteer experience in Visual Impairment organizations.Helping to make the world accessible. #SightedGuide #Braille #SpecialEducation #Inclusion #VI
Lavania @lavaniajegan
23 Followers 224 Following MSc Candidate @ihpmeuoft |👩🏽💻 health systems, social prescribing, equity |💃🏽 @Zumba Instructor | Views my own | Header: @andre_carrilho
Dr. Nancy Butcher @NancyJButcher
691 Followers 856 Following Co-Director @IMPaCTrials PhD Researcher @SickKidsNews Asst Prof @UofTPsych Mom-of-2. She/her. Trials | Meta-research| PPI | Views my own.
Alexis Davis @davis_alex80902
191 Followers 3K Following
Denise Charline @DTeikeu
527 Followers 2K Following MD, MPH, MPA, Adm.A. Health program evaluation analyst and health policies...
ICanCME Research Netw.. @ICanCMEResearch
622 Followers 377 Following The primary resource to initiate, support and sustain innovative and collaborative #MyalgicEncephalomyelitis (ME) research in Canada. #ICanCME #PwME
Tiffany Gowen @pfccdirector
861 Followers 4K Following Healthcare professional passionate in the "the power of partnerships" to improve and enhance #patient- and family-centered care. #PFCC #LungCancer #Healthequity
Jaime @crimsonroses888
711 Followers 1K Following Systems Navigator, Knowledge Mobilization, Research and Resource Connection. M❤M
Annie LeBlanc PhD @Annie_LeBlanc
1K Followers 1K Following Canada Research Chair in Knowledge Mobilization & Integration in Practice | Capacity Building | Shared Decision Making | Clinical encounters | Proud mom
Rizky Anugrah @RizkyAnugr64126
128 Followers 350 Following
FP Gauvin @FPGauvin
494 Followers 839 Following Evidence / Public engagement / deliberation “And I knew exactly what to do. But in a much more real sense, I had no idea what to do.” - Michael Scott
Alies Maybee @amaybee
1K Followers 1K Following Involved patient deeply interested in all aspects of #healthcare especially digital health + patient engagement
Jeanine @JLebsack
2K Followers 5K Following Writer, research assistant reiki healer, mental health advocate, autism, ADHD Proud hockey loving Canadian book lover 🇨🇦
Colleen Haskett @haskett_colleen
261 Followers 914 Following Educator, Lifelong Learner and #ChronicPainMom #accessibility #eds #hsd #patientpartner (she/her/hers) committed to equity, diversity and inclusion
Rose @bodkin31rose
397 Followers 3K Following
Opal @opalcobb55
157 Followers 3K Following
Donna Rubenstein @DonnaRubenstein
809 Followers 2K Following Passionate Optimist, Champion of #PatientPartners #codesign #healthliteracy #DigitalLiteracy . No healthcare decision about me, without me
Janet Gunderson @JanetGunderson
659 Followers 1K Following Patient Partner with the Chronic Pain Network & Saskatchewan SPOR unit. Living with systemic vasculitis and Sjogrens. Canadian Arthritis Patient Alliance
Alun Davies @AlunIwanDavies
1K Followers 900 Following Public, community, stakeholder, youth engagement and involvement with health research Participatory Visual Methods.
Kerry Kuluski @Dr_KerryK
2K Followers 2K Following Research Chair, Associate Prof, Marathoner, lover of learning, coffee and travel, striving to build a better health system with patients and caregivers
CORD @raredisorders
5K Followers 731 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
Envisage Community @envisagenetwork
84 Followers 218 Following A validated, evidence-based program that empowers, supports, and connects caregivers raising children with developmental concerns. T: +61 7 3861 6079
Lorna J @613SportsChick
1K Followers 3K Following Lover of sports, science, food, fashion and her Airedale Terrier Oscar. YSJ born and so happy to be back!!!
Keith Meldrum 🇨�.. @keith_meldrum
2K Followers 817 Following VP at Arthon Constructors, civil engineer technologist, pain & mitochondrial disease advocate, neuropathic pain, dorsal root ganglion pt., researcher
Alejandra Van Dusen @AlejandraVanD
93 Followers 305 Following
Libby Humphris @LibbyHumphris
501 Followers 1K Following Co-lead Public Involvement @EvidenceWales Honorary Research Associate @CUmedicengage Multiple chronic health issues, CSW68 delegate, Crocheter 🧶 Rescue Dog mum
Naveed Aziz @DNAziz_
356 Followers 206 Following Chief Executive Officer - CGEn @CGEnSeq I’d rather be a lab-coat than a suit !
Dr. Christine Chamber.. @DrCChambers
17K Followers 9K Following Busy mom of 4, PhD Psychologist, Scientific Director @CIHR_IHDCYH, Scientific Director @KidsInPain, Professor & Tier 1 @CRC_CRC in Children's Pain @DalhousieU.
Dr. Dawn Richards, Ph.. @TO_dpr
3K Followers 2K Following Living life with #Arthritis along for the ride. Posting & passionate about #Research, arthritis, #PatientEngagement. Opinions my own.
Rachel Martens ♿️.. @RaeofSunshine79
5K Followers 5K Following Research Knowledge Broker, speaker, knowledge mobilization, cancer, childhood disability, rare disease, spoonie, coffee drinker. Opinions are my own.
Stuart G Nicholls (Po.. @StuartGNicholl1
1K Followers 3K Following Pragmatic trials, patient engagement, research ethics. From Leyland (Lancashire) to Ottawa (Ontario) https://t.co/blXTqodVD1…
CIHR @CIHR_IRSC
74K Followers 2K Following Canadian Institutes of Health Research | En français : @IRSC_CIHR | Terms and Conditions: https://t.co/2PrBPlyZwo
Rae Martens -Family E.. @FERProgram
1K Followers 1K Following We train, mentor, and mobilize today’s advocates, champions, and leaders in family engagement.
Laurie Proulx @ProulxLaurie
2K Followers 2K Following Lives with Juvenile Idiopathic Arthritis, all about community & patient engagement, consultant, knowledge broker, health and social policy
sue robins (she/her) @suerobinsyvr
8K Followers 5K Following Senior Partner @birdcomm | Mama Bear | Former Cancer-Haver | Patient Engagement Consultant |
Maureen Smith @Maureenchats
520 Followers 207 Following Passionate patient partner, rare disease advocate, Adjunct Professor @UofT_dlsph, Teacher at ❤️@INFORMRARE @CochraneConsumr @EvidenceComm @SPORAlliance
PASSERELLE - SPOR Nat.. @Passerelle_NTE
418 Followers 190 Following National hub in capacity development for patient oriented research | Pôle national de développement des capacités en recherche axée sur le patient
AbSPORU @AbSPORU
990 Followers 596 Following The Alberta SPOR SUPPORT Unit is dedicated to the integration of research into care, so that patients receive the right care at the right time.
CIHR-IMHA Community @CIHR_IMHA
1K Followers 1K Following The CIHR-Institute of Musculoskeletal Health & Arthritis (IMHA) mandate is research that enhances active living, mobility, MSK health, oral health & skin health
Dr. Andrea C. Tricco @ATricco
4K Followers 3K Following Canada Research Chair, Director @ Unity Health Toronto, Associate Professor @ University of Toronto, Co Editor in Chief @ Journal of Clinical Epidemiology
Virginia McIntyre �.. @Virginia_McI
2K Followers 689 Following President @Peoplepain |Chair @CanadianPain PWLE com | Passionate #Osteoporosis #ChronicPain #PatientInclusion | Public Speaker Tweets/views my own| #StandBy🇺🇦
Garrett Barry @garrettsbarry
862 Followers 1K Following MD FRCPC Anesthesiologist | Regional Anesthesia & Acute Pain | @CAS_RegAnes | @CAS_History
CIHR-IHDCYH @CIHR_IHDCYH
4K Followers 2K Following The Institute of Human Development, Child and Youth Health (#IHDCYH) @CIHR_IRSC supports research to improve the health of children, youth and families.
Professor Karim Khan .. @KarimKhan_IMHA
12K Followers 8K Following Scientific Director, working with great team @ CIHR-Institute of Musculoskeletal Health & Arthritis. My job: servant of research communities. Not a GoC account
Larry Mróz @DrMroz@m.. @DrMroz
2K Followers 2K Following Research Services @BCSUPPORTUnit @HlthResearchBC #LearningHealthSystems #PatientEngagement #Nutrition #MensHealth https://t.co/KHv7UWKE4v…
DalAnesthesia @DalAnesthesia
772 Followers 367 Following Department of Anesthesia, Pain Management & Perioperative Medicine @HealthNS @DalMedSchool @DalMedNB @DalhousieU @IWKHealth @HorizonHealthNB
Dr. Perri Tutelman @DrPerriTutelman
5K Followers 4K Following Psychologist | Postdoc @AHS_CancerCare & @UCalgaryPsyOnc | Psychosocial Oncology & Pain | She/her | Views my own | #AYACancerPSP
HDBuzz @HDBuzzFeed
7K Followers 3K Following Huntington’s disease research news. In plain language. Written by scientists. Editors @profedwild @jcarroll42 @labscribbles @rungenado & @LeoraFoxTweets
Dr Mary Abigail De Ve.. @maryadevera
2K Followers 1K Following Epidemiologist #cancer #arthritis l Canada Research Chair l Assoc Prof @ubcpharmacy l Assoc Dean Postdoctoral Fellows @UBCGradSchool #colorectalcancer thriver
Andrea Cross @cross_acc
534 Followers 489 Following Assistant Professor, Department of Pediatrics, McMaster University
Childhood Arthritis &.. @cabc2024
17 Followers 38 Following Welcome to the official page for the Childhood Arthritis & Beyond Conference 2024 presented by UCAN
CIHR-IPPH | ISPP-IRSC @ipph_ispp
53 Followers 153 Following CIHR Institute of Population and Public Health (IPPH) | Institut de la santé publique et des populations (ISPP) des IRSC #HealthEquity #ÉquitéEnSanté
Dr. Johnathan Flowers.. @shengokai
16K Followers 2K Following Martial artist, motorcyclist, and comics philosopher. Areas: Japanese phil, race, gender, disability, and tech/AI. Pragmatic Dragon. He/Him/His 🏳️🌈
Canadian Association .. @PorphyriaCanada
95 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Stem Cell Network @StemCellNetwork
24K Followers 809 Following SCN is a Canadian not-for-profit supporting stem cell and regenerative medicine research, training, and knowledge mobilization.
Can-SOLVE CKD Network.. @cansolveckd
1K Followers 867 Following A pan-Canadian patient-oriented kidney research network/un réseau pancanadien de recherche sur les maladies rénales qui est axée sur les patients.
Canadian Covid Societ.. @CanCovSoc
3K Followers 43 Following A non-profit dedicated to continuing the fight against the acute and long term risks of Covid-19
CNPRM @CNPRMadmin
676 Followers 453 Following Canadian National Perinatal Research Meeting is Canada's pre-eminent meeting for perinatal clinicians, social and fundamental scientists
Community-Based Resea.. @CbrcResearch
2K Followers 945 Following Advancing community-based research excellence in Canada by strengthening partnerships, bridging capacity, mobilizing knowledge, and championing CBR
Royal Canadian Instit.. @RCIScience
3K Followers 707 Following Connecting you with science in Canada since 1849.
IMAGINE ID @imagineidnews
989 Followers 935 Following A multi-centre research team dedicated to understanding links between genetics & mental health in intellectual disability. 3300+ joined so far worldwide
CAPRI_Canada @CAPRI_Canada
78 Followers 41 Following The official account of the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI). Engaging in pediatric rheumatology research across Canada.
drloritucker @LoriBTucker1
587 Followers 434 Following caring for kids with arthritis and rheumatic disease. research making a difference. creative communicator. love my family, good cup of coffee and sunny days.
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.
Canadian Rare Disease.. @CanadianRDN
229 Followers 595 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
CIHR-III | IRSC-IMII @CIHR_III
204 Followers 319 Following CIHR Institute of Infection and Immunity (III) | Institut des maladies infectieuses et immunitaires (IMII) des IRSC (IMII)
Francois Bernier @Genedoc35
393 Followers 205 Following Professor, Department of Medical Genetics and Pediatrics, University of Calgary. Clinical Geneticist. Wannabe photographer.
The Blueprint Transla.. @Team_Blueprint
275 Followers 271 Following A preclinical to clinical research team at the @ottawahospital, working to accelerate #bench2bedside translation.
MitoCanada @MitoCanada
2K Followers 248 Following Offering hope to those living with – or at risk of developing – mitochondrial disease through support, education, awareness and research. 💚 #MitoCanada
Survivor Network CA @survivornetca
8K Followers 8K Following Canadian Cancer Survivor Network | Promoting the very best standard of care, support, follow up and quality of life for cancer patients and survivors.
Canadian Orthopaedic .. @CdnOrthoAssoc
3K Followers 1K Following The Canadian Orthopaedic Association #CdnOrthoAssoc is a not-for-profit professional association representing the interests of orthopaedic surgeons in Canada.
Neuromuscular Disease.. @NMD4Canada
1K Followers 504 Following Canadian network connecting clinicians, scientists, patients, and industry to improve neuromuscular disease outcomes.
Diana Nakib @DianaNakib
109 Followers 167 Following PhD(c) | Transplantation Immunology in the MacParland Lab | Department of Immunology, UofT
OrthoEquity: Inclusiv.. @EDISurgery_PSP
68 Followers 281 Following Our James Lind Alliance Priority Setting Partnership aims to identify and prioritize the top ten unanswered questions about diversity in orthopaedic surgery.
Janelle Bowden @JanelleBowden
2K Followers 2K Following Muddling through. Passionate abt #medicalresearch #clinicaltrials #technology #innovation #patientvoice #ppi #patientengagement #womeninstem @AccessCR she/her
Hearts in Rhythm Orga.. @HeartsInRhythm
2K Followers 2K Following HiRO | cardiogenetics experts, researchers, genetic counsellors, nurses & families | improving detection & care of inherited arrhythmias & cardiomyopathies 🇨🇦
Michela Onali @Michi_Onali
69 Followers 103 Following Cross-cultural mediator, #GNEMyopathy and #RareDisease advocate. I dive into what is #Rare, unexpected and new to me. Share and be #FAIR
Lochmüller Lab @LochmullerLab
798 Followers 345 Following Hanns Lochmüller's research lab in Ottawa, Canada. Clinical and basic research in neuromuscular and rare disease. Tweets by Hanns and team.
ProDGNE @ProDGNE
121 Followers 162 Following #ProDGNE unifies European and Canadian efforts to develop a novel #prodrug as a therapeutic approach for #GNEMyopathy, a #rare 🧬 muscle disease #EJPRD #JTC2020
IDEA Lab @idealab_sk
10 Followers 9 Following Pediatric Rheumatology Research Improving the lives of children with rheumatic diseases.
Kaylee Byers, PhD @kaylee_byers
1K Followers 2K Following One Health | Wildlife | Comms | Deputy Director BC @cwhcrcsf | Assistant Prof @sfu_fhs + @pippsbc | Host of Nice Genes! podcast | Cofounder @nerdniteyvr she/her
HLAnne PhD @Halpingal
2K Followers 2K Following Account is a hot mess of HLA, immunogenetics, ABO, transplant, healthcare, laboratory medicine, education, politics, and YEG (she/her). Living kidney donor-2022
Dr. Nancy Butcher @NancyJButcher
691 Followers 856 Following Co-Director @IMPaCTrials PhD Researcher @SickKidsNews Asst Prof @UofTPsych Mom-of-2. She/her. Trials | Meta-research| PPI | Views my own.
lydia-joi marshall @lydiajoimarsha1
233 Followers 299 Following Health Equity Champion. President, Black Health Alliance @blackhealthCAN, researcher @UHN. I explore human nature.
Kids Brain Health Net.. @KidsBrainHealth
5K Followers 1K Following Kids Brain Health Network is focused on early diagnosis, treatment & support for kids with neurodevelopmental disabilities. Follow us on IG: @ kidsbrainhealth
Annie LeBlanc PhD @Annie_LeBlanc
1K Followers 1K Following Canada Research Chair in Knowledge Mobilization & Integration in Practice | Capacity Building | Shared Decision Making | Clinical encounters | Proud mom
FP Gauvin @FPGauvin
494 Followers 839 Following Evidence / Public engagement / deliberation “And I knew exactly what to do. But in a much more real sense, I had no idea what to do.” - Michael Scott
Colleen Haskett @haskett_colleen
261 Followers 914 Following Educator, Lifelong Learner and #ChronicPainMom #accessibility #eds #hsd #patientpartner (she/her/hers) committed to equity, diversity and inclusion
Guillaume Bourque @guilbourque
3K Followers 589 Following Prof in Human Genetics @McGillU, Director of Bioinformatics @McGillGenome and Director of @C3Genomics @[email protected]
Donna Rubenstein @DonnaRubenstein
808 Followers 2K Following Passionate Optimist, Champion of #PatientPartners #codesign #healthliteracy #DigitalLiteracy . No healthcare decision about me, without me
PoPNS @PoP_NovaScotia
2K Followers 311 Following Protect Our Province Nova Scotia is a community care initiative focussed on reducing COVID transmission through evidence-based mitigation.
Arthritis Research Ca.. @Arthritis_ARC
7K Followers 2K Following Leading Research. Finding Answers. Saving Lives.
Trudy Taylor @HalifaxRheum
472 Followers 741 Following Rheumatologist, Clinician Teacher, Bluenoser. views are my own. She/Her
RareDiseaseDiversityC.. @rarediseasediv1
164 Followers 45 Following
PLRH @plrh_cambridge
370 Followers 332 Following The PLRH aims to support and co-produce clinical trials as proposed by patient organisations. Contact us with your research ideas at [email protected]
Dr. BlackDeer @DrBlackDeer
47K Followers 3K Following #Tsistsistas - S. Cheyenne Nation | Indigiqueer 🌈 | decolonize, defend, disrupt | anti-colonial abolitionist | Views all me 🤙🏽
Delighted to see the #GeneticsAdviser advance the delivery of genomic testing services. Especially rewarding to see a solution built by patients for patients improve access + their care experiences. #Genetics #Genomics at scale with #digitalhealth ➡ geneticsadviser.com
Dr. @YvonneBombard, genomics researcher at St. Michael's Hospital, developed Genetics Adviser in collaboration with patients to help them through their genetic testing experience and give them faster access to care. @CIHR_IRSC cihr-irsc.gc.ca/e/53896.html
Honoured to have received a Doctoral Research Award from @CIHR_IRSC through the sex, gender, and intersectionality in health research priority area @CIHRIGH. A huge thanks to my mentors (especially @joanacspinto), my supervisor, and everyone who has supported me! @oxengsci
Dear @Rifton , my son is 10 years old. Today, for the very first time, he walked down his school corridor towards me without any adult help. Thanks to his new Pacer walking frame. Thank you so much for giving him freedom! A very proud mama moment 🥺❤ #RareDiseaseLife
Looking forward to #UWTL2024 @UWaterloo tomorrow! I’ll be speaking at a workshop about online grad seminar courses and their value for students with diverse needs, emphasizing inclusion & safety during the ongoing spread of SARS-CoV-2. 🔗 uwaterloo.ca/uw-teaching-an… Wish me luck!
May is Huntington's Disease Awareness Month! Awareness events will be happening all over the world. The #Barrie Chapter will #LightItUp4HD on our waterfront on May 8th. On May 16th we'll hold our fundraising walk for @HuntingtonSC amongst the Trilliums. #HDAwarenessMonth
Congratulations @SFdirewolf on your newest soon to be bestseller! Very honoured to be in the book and can't wait to read the other contributors.
📣 💐📚Happy book day to me! DISABILITY INTIMACY has been a labor of love that I worked on for the last 2 years. I hope you enjoy it. bookshop.org/p/books/disabi…
📢 Hoping you can join this amazing group - Kimberly Strain, @DisabilitywAnna @Therese_Lane01 & @funnelll - who will be sharing their motivations for being #PatientPartners in #Research (it's ok if you can't, the webinar will be recorded!)👇 #PatientEngagement #PPI
🤩Motivations for being a patient partner in research. Join us on May 9 at 1 pm PT / 4 pm ET / 8 pm UTC. 👉pxphub.org/event/webinar-… #PatientEngagement #HealthResearch #PPI #ConsumerInvolvement
We are in the final week of preparation for the @CAFsociety Family day on Sunday and then the @cabc2024 conference! Looking forward to sharing findings from our @ucancandu health economics research, seeing colleagues and our JIA PaCERS! #cabc2024 #connectingJA
You know what needs a big overhaul? Health conferences. They've regressed big-time since 2020. Back to being elite events, flying in big-name speakers giving canned talks, in-person only, little patient representation. /1
I have a piece coming out tomorrow about MAiD that I hope people will read. It also contains some things about my own life and health history which never stops feeling uncomfortable for several reasons. There's no anonymity when I share things so I'm constantly meeting people who
Unseparated bike lanes are just parking in Toronto. This on one of the busiest bike routes in the city at the busiest time. 15 or so cyclists just as I went by. Where's the enforcement? College and Bay ish @TheBikingLawyer @MayorOliviaChow
Very timely & important event today @WindsorLaw “Oversized Danger: The Effect of Front-end Vehicle Height on Pedestrian Death Risk.” Any pedestrian & frequent bike user knows how growing size of cars are a threat to life & security us02web.zoom.us/webinar/regist…
POPNB has topped up the free Canadian-made respirators available at registration at #ph24sp. These masks by @CanadamasQ and @canadastrong were purchased by an NB mom and brought to share with any attendees. Try one on (large on left; medium right); see how breathable they are!
Thrilled to have a mention of types of diabetes other than Type 1 and Type 2 at the #HealthData4AllOfUs forum.
POPNB has donated respirators to the registration desk if anyone would like to try a @canadastrong or @CanadamasQ respirator while we share this air! #ph24sp
I'm so tired of lived experience on its own being treated as some magic charm. As if we don't have some disabled people who are extremely famous examples of having incredibly harmful views and work based on their lived experience.
Something which isn't talked about enough is the cumulative loss of being in the cancer advocacy community. Another person I peripherally knew and admired died last week. Remembering them today and the others who have made such a difference in their shortened lives.
I wonder if people realize how much I wish I was not stuck talking about all they do wrong. I did not sign up to be a 'critic,' I was made one by a society that deemed me, my knowledge and my existence, unwelcome and unvalued. Critic is just a small part of who I am & of justice.
Disabled people overrepresented in study of evicted tenants Thanks for interviewing me about this unsurprising result of neoliberal housing policy, individualistic consumerist accessibility, entrenched ableism & legislated poverty @kul_akshay_ cbc.ca/news/canada/br…
A lot of disabled people had their hopes crushed today so please take care of each other. Today is a day to do, what Erin Gilmer taught me - reach-in don't just tell people to reach out. So look around this site and reach-in to others.
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