Durhane Wong-Rieger

@OEA_oficial BRAVO! 😍👋

Presentación de la Vicepresidenta de la Federación Peruana de Enfermedades Raras, Estremadoyro Reyes, en conmemoración del Día Mundial de las Enfermedades Raras en el Consejo Permanente

@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

One of the side events in UNGA is on the important issue of rare diseases. Malaysia is committed to achieving a high standard of comprehensive care towards implementing Universal Health Coverage for individuals living with rare diseases. The National Rare Disease Committee was established in 2018, under the purview of the National Framework for Rare Diseases, to improve patients' quality of life and comprehensively manage rare diseases, involving cross sector from government, healthcare professionals to patient advocates.   Malaysia has also established a National Trust Fund specifically designed for rare diseases. This fund supports treatment, research, and financial assistance, ensuring that they have access to quality healthcare. #MalaysiaMADANI #UNGA78 #RareDisease

🙌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/Petition/De…

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

👏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

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/Petition/De…

🚨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: #Canada4Rare" target="_blank" rel="nofollow noopener">petitions.ourcommons.ca/en/Petition/De… #cdnhealth #cdnpoli

Ottawa to spend $1.5 billion to improve access to drugs for rare diseases cp24.com/lifestyle/otta… via @cp24

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. +

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-dis…

URGENT! 🇨🇦WE NEED YOU🇨🇦 patients/caregivers in Canada to SHARE YOUR EXPERIENCE & VIEWS in @raredisorders community survey 👉 tinyurl.com/CORD2022Englis… This will help healthcare leaders understand what Canadian rare disease patients are experiencing & expect!

🚨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

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

@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

Planning Smart Webinar Series! There's still time to register for next week's Webinars! @RareDiseases @CanMPSSociety @defeatduchenne @canpku Registration:raredisorders.ca/webinar-series…

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-in…