INFORM RARE (@INFORMRARE) profile picture

INFORM RARE

@INFORMRARE

INFORM RARE is a Canadian research network that provides evidence to improve outcomes and health care for children with rare genetic diseases.

 Canada
informrare.ca/
Joined September 2012
  • Tweets230
  • Following93
  • Followers243
41Media
Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)Photo by INFORM RARE (@INFORMRARE)
📣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/informr… Thank you for your support!💙
INFORM RARE | LinkedIn

INFORM RARE | LinkedIn

INFORM RARE | 38 followers on LinkedIn. Generating evidence to support decision-making in research and health care practices for children with rare diseases. | INFORM RARE is a Canadian research...

linkedin.com
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INFORM RARE retweeted
IRSC (@IRSC_CIHR) profile picture
IRSC
@IRSC_CIHR1 Nov 2024
🎉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-IDSEA #EntretiensIDSEA
Image from IRSC (@IRSC_CIHR)
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INFORM RARE retweeted
CIHR (@CIHR_IRSC) profile picture
CIHR
@CIHR_IRSC1 Nov 2024
🎉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-IDSEA #IHDCYHTalks
Image from CIHR (@CIHR_IRSC)
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INFORM RARE retweeted
IMPaCT (@IMPaCTrials) profile picture
IMPaCT@IMPaCTrials9 Sep 2024
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
Image from IMPaCT (@IMPaCTrials)
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INFORM RARE retweeted
CDA-AMC (@CDA_AMC) profile picture
CDA-AMC@CDA_AMC5 Sep 2024
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
Image from CDA-AMC (@CDA_AMC)
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Le mois d'août est le mois de la sensibilisation à l’amyotrophie spinale! Avec les conseillers jeunesse INFORMER RARE, nous avons récemment codéveloppé une vidéo d’animation à propos de l’essai clinique INFORMER AS Exergame.
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Le recrutement pour participer à l’étude débutera bientôt! Pour regarder la vidéo, visitez: youtu.be/OpLhYepyY8E?si=n3BA…
Essai clinique sur un jeu vidéo actif pour l’amyotrophie spinale

Essai clinique sur un jeu vidéo actif pour l’amyotrophie spinale

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

youtube.com
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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=EM1e…
Exergaming Clinical Trial for Spinal Muscular Atrophy

Exergaming Clinical Trial for Spinal Muscular Atrophy

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

youtube.com
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C'est la journée internationale de la PCU ! Le mois dernier, nous avons lancé le Registre canadien de la PCU en partenariat avec CanPCU+.
Voulez-vous participer au Registre canadien de la PCU? Visitez https://pkuregistry.ca/?lang=fr pour en savoir plus et y participer!

ALT Voulez-vous participer au Registre canadien de la PCU? Visitez https://pkuregistry.ca/?lang=fr pour en savoir plus et y participer!

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Un merci spécial à nos patients partenaires, conseillers jeunesse, conseillers parents et co-investigateurs pour leur collaboration à cet important projet !
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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!
Do you want to join The Canadian PKU Registry? Visit https://www.pkuregistry.ca/ to learn more and join!

ALT Do you want to join The Canadian PKU Registry? Visit https://www.pkuregistry.ca/ to learn more and join!

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C’est la Journée de sensibilisation aux MPS! Ce mois-ci, nous avons lancé le Registre canadien de la MPS en partenariat avec la Société canadienne des MPS.
Voulez-vous participer au Registre canadien de la MPS? Visitez https://mpsregistry.ca/?lang=fr pour en savoir plus et y participer!

ALT Voulez-vous participer au Registre canadien de la MPS? Visitez https://mpsregistry.ca/?lang=fr pour en savoir plus et y participer!

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Un merci spécial à nos patients partenaires, conseillers jeunesse, conseillers parents et co-investigateurs pour leur collaboration à cet important projet ! #MPSAwarenessDay
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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!
Do you want to join The Canadian MPS Registry? Visit https://www.mpsregistry.ca/ to learn more and join!

ALT Do you want to join The Canadian MPS Registry? Visit https://www.mpsregistry.ca/ to learn more and join!

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Bonne nouvelle : le Registre canadien de la MPS est lancé aujourd’hui! Est-ce que vous ou un membre de votre famille êtes atteint(e) de la mucopolysaccharidose (MPS)? Voulez-vous participer au Registre canadien de la MPS?
Voulez-vous participer au Registre canadien de la MPS? Visitez https://mpsregistry.ca/?lang=fr pour en savoir plus et y participer!

ALT Voulez-vous participer au Registre canadien de la MPS? Visitez https://mpsregistry.ca/?lang=fr pour en savoir plus et y participer!

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Visitez mpsregistry.ca/?lang=fr pour en savoir plus et y participer! Si vous avez des questions, veuillez contacter le personnel de l'étude le Registre canadien de la MPS à [email protected]
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Bonne nouvelle : le Registre canadien de la PCU est lancé aujourd’hui! Est-ce que vous ou un membre de votre famille êtes atteint(e) de la phénylcétonurie (PCU)? Voulez-vous participer au Registre canadien de la PCU?
Voulez-vous participer au Registre canadien de la PCU? Visitez https://pkuregistry.ca/?lang=fr pour en savoir plus et y participer!

ALT Voulez-vous participer au Registre canadien de la PCU? Visitez https://pkuregistry.ca/?lang=fr pour en savoir plus et y participer!

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Visitez pkuregistry.ca/?lang=fr pour en savoir plus et y participer! Si vous avez des questions, veuillez contacter le personnel de l’étude le Registre canadien de la PCU à [email protected]
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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]
Do you want to join The Canadian PKU Registry? Visit https://www.pkuregistry.ca/ to learn more and join!

ALT Do you want to join The Canadian PKU Registry? Visit https://www.pkuregistry.ca/ to learn more and join!

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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]
Do you want to join The Canadian MPS Registry? Visit https://www.mpsregistry.ca/ to learn more and join!

ALT Do you want to join The Canadian MPS Registry? Visit https://www.mpsregistry.ca/ to learn more and join!

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