CORD
@raredisorders
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CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
Toronto, Canada
Joined September 2013
Patient Perspectives: Is patient experience finally having its moment? via @HealthyDebate @CdnCMLNetwork @Iamlisamachado
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🚨 Sauver la mesure du patient d’exception, c’est sauver des vies – Lisez l’article dans @LP_LaPresse de @CoalitionCancer @raredisorders & RQMO sur pourquoi les changements prévus à cette mesure mettront des vies en danger : #MaladiesRares  @cathboivin
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Saving the patient exception mechanism means saving lives”! @LP_LaPresse article from @CoalitionCancer @raredisorders & Quebec Rare Diseases Network explain why planned changes to Quebec’s patient d’exception puts patient lives at risk: #PolQC @cathboivin
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RT @retfalvi: Great hearing from @Durhane of @raredisorders and my @GPAinsights colleague @waynedcritchley on the rare disease landscape i…
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Québec plans to limit its "Patient d’exception" measure, vital for rare disease treatments. We urge @cdube_sante: pause these changes & consult patients/clinicians. 🛑 Lives are at risk. Read our open letter:
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Le Québec veut restreindre « Patient d’exception », un accès vital aux traitements nécessaires. 📉 Nous demandons à @cdube_sante de suspendre ces changements et de consulter patients/cliniciens. 🛑 Des vies sont en jeu. #qcpoli Lisez notre lettre ouverte :
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Exciting news! 🇨🇦 The Canadian chapter of the @wilsondisease Association is hosting a one-day conference for WD patients, caregivers, friends, & supporters! 🧬 Details & registration link coming soon! 📧 alice.williams@wilsonsdisease.org #WilsonDisease #RareDisease #Canada
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Rare Disease Day is approaching On Feb 28th, landmarks across Canada will light up in pink, purple, and blue for #LightUpForRare See the list of monuments and how you can get involved: Let us know if you’ve made an application to light up a landmark!
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RT @CanadianRDN: 📣 New Brunswick has become the 5th province to have signed an agreement with Health Canada under the National Strategy for…
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RT @ACTAEC: Join Maureen Smith and Andrea Chow for a webinar on engaging patient partners in CIHR grant applications! 📅 Jan 16, 2025 ⏰ 12…
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🚨 Québec : Protégeons l'accès aux traitements pour maladies rares ! Le programme patient d'exception est menacé en 2025. Partagez votre expérience via notre sondage et agissez pour le préserver. 🔗 Sondage : #PatientDException
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🚨 Quebec: Protect Access to Rare Disease Treatments! Proposed 2025 changes to patient d'exception risk blocking life-saving care. Share your experience in our survey to help save this pathway. 🔗 Survey: #RareDiseases #SavePatientDException
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RT @CanadianRDN: On Friday, the Government of Canada and the province of Saskatchewan signed the National Strategy for Drugs for Rare Disea…
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Canada is the ONLY developed country without a national strategy for #RareDiseases, affecting 3M Canadians. It's time for federal leaders to step up by creating a strategy that improves care, research, & access to therapies Full Letter👉
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RT @CanadianRDN: Did you know? 💡Using exome sequencing (ES) as a first-line test for suspected rare genetic conditions can improve the diag…
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🚨 Québec : Protégeons l'accès aux traitements pour les maladies rares !Des changements à la mesure du patient d'exception en 2025 pourraient limiter des soins vitaux. Partagez votre expérience dans notre sondage. 🔗 Compléter le sondage :
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🚨 Quebec: Protect access to rare disease treatments! Planned changes to patient d’exception in 2025 could limit life-saving care. Share your story in our survey to help protect this vital pathway. 🔗Take the survey: #RareDiseases #SavePatientDexception
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