Durhane Wong-Rieger

Durhane Wong-Rieger is president of the Canadian Organization for Rare Disorders. She is also president and CEO of the Institute for Optimizing Health Outcomes.

[Durhane Wong-Rieger @Durhane]

@OEA_oficial BRAVO! 😍👋

[Durhane Wong-Rieger @Durhane]

@DrZalihaMustafa We are so grateful for the amazing leadership and commitment of @DrZalihaMustafa to the rare disease patient community. Looking forward to seeing you in November with our APARDO conference. Thanks for support

[CORD @raredisorders]

🙌THANK YOU🙌 to everyone who has signed the petition to help ensure the success of the National Strategy for Drugs for Rare Diseases. Your support is incredible! We've already reached over 1900 signatures! Let's break 2000 by next week!

🇨🇦PLS SIGN HERE https://t.co/oec0yHruJi

[Alliance for Regenerative Medicine (ARM) @alliancerm]

We’re sounding the alarm on the EU Joint Clinical Assessment. 🚨

The methodology proposed by EUnetHTA-21 would have rejected 90% of the cell & gene therapies authorized in the EU.

ARM is issuing an urgent call to action to modernize the JCA’s framework. 1/4

[CORD @raredisorders]

👏THANK YOU to everyone who has signed the petition to help ensure the National Strategy for Drugs for Rare Diseases is successful. We have reached over 1000 signatures! Let's keep the momentum going!

🇨🇦PLS SIGN HERE 👉 https://t.co/FkL5lAJPiz

[Durhane Wong-Rieger @Durhane]

Thrilled to participate at @CADTH_ACMTS #CADTHSymp panel in front of a packed room -> need patients as full partner for @GovCanHealth drugs for #RareDiseases strategy #CdnHealth #Canada4Rare @Durhane

[CORD @raredisorders]

WOW! THANK YOU to everyone who has signed the petition to help ensure the National Strategy for Drugs for Rare Diseases is successful. We have reached over 500 signatures in just over a week! LET’S DOUBLE

THIS BY NEXT WEEK. PLS SIGN HERE 👉 https://t.co/oec0yHruJi

[CORD @raredisorders]

🚨Attn Canadians w #rarediseases: CORD needs your help to ensure the National Strategy for Drugs for Rare Diseases is successful. Please sign this petition from MP @ChrisLewisEssex to make it happen: https://t.co/Q0JklCrUP4 #cdnhealth #cdnpoli

[Durhane Wong-Rieger @Durhane]

Ottawa to spend $1.5 billion to improve access to drugs for rare diseases https://t.co/F3HgJ2ngd0 via @cp24

[Americas Health Foundation (AHF) @AmeriHealthFoun]

Download here our agenda for the First Latin American Congress on Rare Diseases, which was designed to further knowledge and engagement in the rare disease ecosystem, forming the groundwork for stakeholders to take action at multiple levels.

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[National Press Foundation @NatPress]

When @raredisorders’ @Durhane held a press conference on hemophilia, only one journalist showed up. But that one reporter made a difference. “It went from being this an issue that nobody knew about to being front page issue.”

https://t.co/6snWwu0jxf

[Durhane Wong-Rieger @Durhane]

URGENT! 🇨🇦WE NEED YOU🇨🇦 patients/caregivers in Canada to SHARE YOUR EXPERIENCE & VIEWS in @raredisorders community survey 👉 https://t.co/L868wdhIBV

This will help healthcare leaders understand what Canadian rare disease patients are experiencing & expect!

[RARE innovators @RAREinnovators]

🚨WANTED: Canadian solutions for rare disorders🚨 Too many Canadians with rare diseases can’t get diagnosed or access to care. Strong 🇨🇦 federal and provincial rare disease strategies will help ‼️ https://t.co/kOFbSQo9jm #Canada4Rare #CdnPoli #ONPoli #CdnHealth #RareDiseases

[Durhane Wong-Rieger @Durhane]

🚨📢@raredisorders calls for First Ministers to address the urgent need for a Rare Disease National Plan #cdnpoli #cdnhealth #Canada4Rare #COF202

[CORD @raredisorders]

It’s time for a pan-Canadian strategy for #rarediseases
An open letter to Premiers 👉https://t.co/kIHL84T5Xj
@FureyAndrew
@Premier_Silver
@CCochrane_NWT
@j_akeeagok
@TashaKheiriddin
@picardonhealth
@KCroweToronto
#cdnpoli #cdnhealth #Canada4Rare #COF2022

[Durhane Wong-Rieger @Durhane]

🚨📢@raredisorders calls for First Ministers to address the urgent need for a Rare Disease National Plan #Canada4Rare #cdnpoli #cdnhealth #COF2022

[CORD @raredisorders]

It’s time for a pan-Canadian strategy for #rarediseases
An open letter to Premiers 👉https://t.co/kIHL84T5Xj
@jjhorgan
@jkenney
@PremierScottMoe
@HStefansonMB
@fordnation
@francoislegault
@premierbhiggs
@TimHoustonNS
@dennyking
#cdnpoli #cdnhealth #Canada4Rare #COF2022

[Durhane Wong-Rieger @Durhane]

.@raredisorders and @rarediseasesint stand with the global rare disease community at #HLPF.
I will deliver Key Messages to #rarediseases community at the Formal Side-Event on #gender and #rarediseases

👉 6 July 2022, ONLINE https://t.co/0xYAUlhfO1

[Durhane Wong-Rieger @Durhane]

@raredisorders and @rarediseasesint stand with the global rare disease community at #HLPF.
I will deliver Key Messages to #rarediseases community at the Formal Side-Event on #gender and #rarediseases

👉 6 July 2022, ONLINE https://t.co/0xYAUlhfO1

[Durhane Wong-Rieger @Durhane]

So looking forward to moderating this important webinar with @billdempster next week!
Registration:https://t.co/ndw4rVFa3O
#Canada4Rare

[CORD @raredisorders]

Planning Smart Webinar Series! There's still time to register for next week's Webinars! @RareDiseases @CanMPSSociety @defeatduchenne @canpku

Registration:https://t.co/bpSxxk97vE

[Durhane Wong-Rieger @Durhane]

In just 5 seconds, you can help save the lives of Canadians living with rare diseases. Sign CORD petition. Send a message to your government representative: https://t.co/zcOaVfGrZ4