Bonne nouvelle : le Registre canadien de la PCU est lancé aujourd’hui! Vous ou un membre de votre famille êtes atteint(e) de la phénylcétonurie-PCU? Visitez loom.ly/BVgYtoY Si vous avez des questions, le Registre canadien de la PCU à [email protected]

The Canadian PKU Registry launches today! Do you or your family member have phenylketonuria-PKU Interested in advancing research? Join Canadas PKU Registry Visit loom.ly/h6qgJIU If you have any questions, contact The CDN PKU Registry Study at [email protected]

Are you interersted in hosting 'Spare for Rare' in your community - but don't know where to start? Join our information session to learn exactly how easy it can be!
Register at: loom.ly/E2P23t0
#WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #WeCanPCU #SpareforRare

Ça bouge! #Palynziq est lancé au #Canada dès AUJOURD'HUI! Parlez à votre clinique pour savoir si ce #traitement #biologique injectable vous convient. Un peu de patience est toujours nécessaire pour obtenir la prescription et l'administration du médicament #phénylcétonurie

Things are moving!! Palynziq is FINALLY launching in Canada as of TODAY!
Talk to your clinic to see if this injectable biologic treatment is right for you.
Please note: Some patience is still needed on getting the drug prescribed and administered to you, but things are moving!

Exciting news is coming!!

#PKU nity #PKU Proud #CanPKU #WeCanPKU #Phenylketonuria
#PKU #HCU #MSUD #UCDs #maladiesrare #PCU #passirare #RareDisease #NotSoRare #1in12

Des choses excitantes arrivent bientôt.

#PCU #maladiesrare #phénylcétonurie #passirare #PasSiRare #Recherche #GuérisonPourLesRares #CombatPourLesRares #Connaissance #RareAuCanada #SoutenirLaRecherche #NousCanPCU

#ICTD2024
#TalkClinicalTrials
#CanPKU +
#OntarioClinicalTrials

Attention #BC residents! Our province falls short in providing equitable medication coverage compared to the rest of Canada. Patients and doctors are urging the BC government to address these disparities. badgut.org/bc-equitable-m… 
@GailAttara BC Government News Adrian Dix David Eby

Check out this presentation that was featured at Camp MagniPHEque regarding the adult PKU Brain. Luckily Dr. Shawn Christ allowed us to record and share. loom.ly/ynDRjIA

#WeCanPKU #Phenylketonuria #Research #RareDisease #FightForRare #Knowledge #Science #SupportResearch

This time, Ben welcomes Jamela Gutierrez to the table!

You won't want to miss it! ➡️ Follow the HC&U Podcast
on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or, head to loom.ly/Yu0NyQs and you can catch it there!
#podcast #lowprotein #research #WeCanPKU #HCU

Are you or do you know a high-school senior or current student pursuing an undergraduate degree or technical school with Classical HCU, MSUD, OA, PKU, TYR, or a UCD? Applications are now being accepted at scholars.flok.org. #FLOK #Rare #Scholarship #PKU #HCU #MSUD #UCDs

Are you interested in hosting a mini fundraiser?
We will support you in setting up a bowling event at your local bowling center. Email Melissa at [email protected] today for more info!
#WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #SpareforRare

Are you interested in hosting a mini fundraiser?
We will support you in setting up a bowling event at your local bowling center. Email Melissa at [email protected] today for more info!
#WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #SpareforRare

Partagez votre histoire rare avec le hashtag #JournéeMaladieRare2024

Célébrez votre rareté.

Share your story! Celebrate YOUR RARE DAY Feb 29, 2024

#WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #WeCanRare #RareDiseaseDay2024

February 29 is #RareDiseaseDay , the rarest day of the year! 300 million people worldwide and their loved ones affected by a rare disease, I encourage you to learn about our journeys and how YOU can help us today: bit.ly/RDD2024 and canpku.org/donations
#maladiesrare

I AM RARE. Show your Stripes on Feb 29, 2024.
Celebrate Rare Day
@NORD #WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #PKU #HCU #MSUD #UCDs #Networking

The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. One out of every 10 Americans has a rare disease. On February 29, #RareDiseaseDay , post a selfie with the hashtag #ShowYourStripes to share your rare story with others!

CanPKU+
is host an event Feb 28th 2024 (Please Refer to poster for start time)

To register for this event please use the link below
🔗🔗
loom.ly/XLX-7ZY

#WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #WeCanTYR #RareDisease #Openhouse