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.
Toronto, Ontario
Joined April 2009
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Durhane Wong-Rieger retweeted
🙌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 petitions.ourcommons.ca/en/P…
Durhane Wong-Rieger retweeted
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
Durhane Wong-Rieger retweeted
👏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 👉 lnkd.in/g7_tZ8KZ
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
Durhane Wong-Rieger retweeted
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 👉 petitions.ourcommons.ca/en/P…
Durhane Wong-Rieger retweeted
🚨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: petitions.ourcommons.ca/en/P… #cdnhealth #cdnpoli
Ottawa to spend $1.5 billion to improve access to drugs for rare diseases cp24.com/lifestyle/ottawa-to… via @cp24
Durhane Wong-Rieger retweeted
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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Durhane Wong-Rieger retweeted
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.”
nationalpress.org/topic/rare…
URGENT! 🇨🇦WE NEED YOU🇨🇦 patients/caregivers in Canada to SHARE YOUR EXPERIENCE & VIEWS in @raredisorders community survey 👉 tinyurl.com/CORD2022EnglishS…
This will help healthcare leaders understand what Canadian rare disease patients are experiencing & expect!
Durhane Wong-Rieger retweeted
🚨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 ‼️ bit.ly/3CCfzrJ #Canada4Rare #CdnPoli #ONPoli #CdnHealth #RareDiseases
🚨📢@raredisorders calls for First Ministers to address the urgent need for a Rare Disease National Plan #cdnpoli #cdnhealth #Canada4Rare #COF202
It’s time for a pan-Canadian strategy for #rarediseases
An open letter to Premiers 👉bit.ly/3RoMp48
@FureyAndrew
@Premier_Silver
@CCochrane_NWT
@j_akeeagok
@TashaKheiriddin
@picardonhealth
@KCroweToronto
#cdnpoli #cdnhealth #Canada4Rare #COF2022
🚨📢@raredisorders calls for First Ministers to address the urgent need for a Rare Disease National Plan #Canada4Rare #cdnpoli #cdnhealth #COF2022
It’s time for a pan-Canadian strategy for #rarediseases
An open letter to Premiers 👉bit.ly/3RoMp48
@jjhorgan
@jkenney
@PremierScottMoe
@HStefansonMB
@fordnation
@francoislegault
@premierbhiggs
@TimHoustonNS
@dennyking
#cdnpoli #cdnhealth #Canada4Rare #COF2022
.@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 bit.ly/3xNuOKh
So looking forward to moderating this important webinar with @billdempster next week!
Registration:lnkd.in/ey6zaGkE
#Canada4Rare
Durhane Wong-Rieger retweeted
Planning Smart Webinar Series! There's still time to register for next week's Webinars! @RareDiseases @CanMPSSociety @defeatduchenne @canpku
Registration:raredisorders.ca/webinar-ser…
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: hriportal.ca/canada4rare-ini…
Thank you to our co-presenters @raredisorders, our sponsors @GSK, @TakedaPharma and @RAREinnovators for today's all-party discussion on rare disease on #WorldRareDiseaseDay. Here is the video presentation: lnkd.in/eRDXpg3Q
Durhane Wong-Rieger retweeted
📢"Come and join us!"
@Durhane, Chair of RDI's Council, invites you to the KICK-OFF of a year of transformative international policy actions paving the way for a brighter future for PLWRD!
👉bit.ly/35QhD0X
#RareExpoDubai ONLINE 28 Feb
@raredisorders