RT @raredisorders: 🙌THANK YOU🙌 to everyone who has signed the petition to help ensure the success of the National Strategy for Drugs for Ra….

RT @alliancerm: We’re sounding the alarm on the EU Joint Clinical Assessment. 🚨. The methodology proposed by EUnetHTA-21 would have rejecte….

RT @raredisorders: 👏THANK YOU to everyone who has signed the petition to help ensure the National Strategy for Drugs for Rare Diseases is s….

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.

RT @raredisorders: WOW! THANK YOU to everyone who has signed the petition to help ensure the National Strategy for Drugs for Rare Diseases….

RT @raredisorders: 🚨Attn Canadians w #rarediseases: CORD needs your help to ensure the National Strategy for Drugs for Rare Diseases is suc….

Ottawa to spend $1.5 billion to improve access to drugs for rare diseases via @cp24.

RT @AmeriHealthFoun: Download here our agenda for the First Latin American Congress on Rare Diseases, which was designed to further knowled….

RT @NatPress: When @raredisorders’ @Durhane held a press conference on hemophilia, only one journalist showed up. But that one reporter mad….

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

RT @RAREinnovators: 🚨WANTED: Canadian solutions for rare disorders🚨 Too many Canadians with rare diseases can’t get diagnosed or access to….

🚨📢@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

So looking forward to moderating this important webinar with @billdempster next week! .Registration:#Canada4Rare

RT @raredisorders: Planning Smart Webinar Series! There's still time to register for next week's Webinars! @RareDiseases @CanMPSSociety @d….

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:

Great Discussion this Morning #Canada4Rare #RareDiseaseDay Thank you @LifeSciencesON.

RT @ngorarediseases: 📢"Come and join us!" . @Durhane, Chair of RDI's Council, invites you to the KICK-OFF of a year of transformative inter….

PMPRB Heads up! Likely another 6 months delay in draconian and unreasonable drug pricing changes that would restrict Canadian patient access to important new drugs. Expect announcement today. But we cannot rest until changes repealed.