Exciting News: The Canadian MPS Registry launches today! Do you or your family member have mucopolysaccharidosis (MPS)? Do you want to join The Canadian MPS Registry? Visit mpsregistry.ca to learn more and join! For questions, please contact us at [email protected]

Exciting News: The Canadian PKU Registry launches today! Do you or your family member have phenylketonuria (PKU)? Do you want to join The Canadian PKU Registry? Visit pkuregistry.ca to learn more and join! For questions, please contact us at [email protected]

It’s #MPSAwarenessDay! This month, we launched the Canadian MPS Registry in partnership with the Canadian MPS Society. A special thank you to our patient partners, youth and parent advisors, and co-investigators for their collaboration on this important project!

It’s International PKU Day! Last month, we launched the Canadian PKU Registry in partnership with CanPKU+. A special thank you to our patient partners, youth and parent advisors, and co-investigators for their collaboration on this important project!

August is spinal muscular atrophy awareness month! We recently co-developed an animation video about the INFORM SMA Exergame Clinical Trial alongside INFORM RARE youth advisors. Recruitment for the trial will begin soon! To watch the video, visit: youtu.be/JK0pyCyswzQ?si…

To mark our 35th anniversary, we presented 10 Anniversary Medals at Symposium 2024 which recognize individuals whose commitment and dedication have helped maintain #HTA as a vital component of Canada’s health systems. #CDA_AMC #HTA #CdnHealth

Want to learn about designing, communicating, and operating clinical trials for pregnant people and children? 🤰👶🧒 Visit impactrials.ca/awardinfo to start your application today! Deadline to apply: October 18, 2024, 5:00pm CT

🎉IHDCYH Talks 2024 has received the most submissions ever! Thank you to all participants. Time for everyone to vote for their favourites! Check out the submissions and vote before Nov 30. bit.ly/IHDCYH-Vote-ID… #IHDCYHTalks

🎉Le concours Entretiens de l’IDSEA 2024 a connu un succès sans précédent! Merci à tous les participants! C’est maintenant à vous de voter pour vos productions préférées avant le 30 novembre. bit.ly/IHDCYH-Vote-ID… #EntretiensIDSEA

📣We're moving to LinkedIn! INFORM RARE will now share all updates on LinkedIn instead of X. Please consider following us here to stay connected: 🔗linkedin.com/company/inform… Thank you for your support!💙