Discover the all-new look of our redesigned newsletter! Packed with more exciting content, in-depth articles, and a fresh, engaging design. Click here: loom.ly/7c5cfG0 Vous voulez le lire en français ? Maintenant, c'est possible loom.ly/KnbJWIY #RareDisease

The Vineland 3 provides valuable info about a child's adaptive behaviors, which can help determine accommodations that will allow the child to thrive in the learning environment. Caregivers, log in to RARE-X & complete the Vineland 3 assessment! ➡️ homocystinuria.rare-x.org

Dernière chance de donner votre avis sur le calendrier des événements 2025, car nous allons bientôt commencer à mettre les choses en marche ! loom.ly/iXePyb0 #VivreavecRare #MaladieRare #FaibleProtéine #PCU #RareAuCanada #NousCanPCU #NousCanHCU #NousCanMSUD #NousCanTCU

Last Chance to provide your input on the 2025 Event Calendar as we will begin to set the wheels in motion soon! loom.ly/iXePyb0 #WeCanPKU #WeCanHCU #WeCanMSUD #WeCanUCD #WeCanPCU #Showyourstripes #RareDisease #CampMagniPHEque #LivingwithRare #RareDisease #LowProtein

🎙️ New HC&U: A Homocystinuria Podcast episode drops 8/29! ➡️Follow the HC&U Podcast on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or, head to loom.ly/Yu0NyQs #podcast #raredisease #backtoschool2024 #specialeducation #homocystinuria #HCU RARE-X

🎙️ New HC&U: A Homocystinuria Podcast episode out NOW! ➡️Follow the HC&U Podcast on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or, head to loom.ly/Yu0NyQs #podcast #raredisease #backtoschool2024 #specialeducation #homocystinuria #HCU RARE-X

Be sure to register for the next cafe. A full list is available on our home page canpku.org Nous recherchons un barista francophone pour animer des événements. Postulez à [email protected]. #maladiesrare #phénylcétonurie #passirare #CombatPourLesRares #RareAuCanada

September is Newborn Screening Awareness Month The NBS for HCU catches about 50% of cases in the 5 provinces it is screened in. It misses 100% of the cases in all other provinces and territories that are not screening for it. #HCU #RareDisease #BoneHealth #EyeHealth #HCUandNBS

Discover the all-new look of our redesigned newsletter! Packed with more exciting content, in-depth articles, and a fresh, engaging design. Click here: loom.ly/7c5cfG0 Vous voulez le lire en français ? Maintenant, c'est possible loom.ly/KnbJWIY #RareDisease

Avez-vous manqué la publication de la newsletter de ce trimestre ? Cela vaut la peine de la lire ! Découvrez le tout nouveau design de notre newsletter ! Remplie de contenu captivant, d'articles approfondis et d'un design frais et engageant. loom.ly/KnbJWIY #maladiesrare

September is #NewbornScreeningAwareness month. #NBS saves lives as #BabiesFirstTest can detect #genetic, #hormonal, and #metabolicdisorders that might not be seen at birth. #MSUD #PKU #HCU #UCDs are disorders that are screened for and supported by CanPKU+ Tell us your #NBSStory

In Ontario a Poop Card is given to parents leaving the hospital to help catch cases of Biliary Atresia. This is not a disorder covered by CanPKU+ we are very supportive of this tool. For more info from Ontario NBS loom.ly/D_hft60

September is #NewbornScreening Awareness Month #PreventDisability by screening with #BabiesFirstTest.

September is #NewbornScreening Awareness Month. NBS - BC currently screens for #CIT #ASA #CblA #CblB #MUT #GA1 #GALT #HCU #IVA #LCHAD #MSUD #MTP #MCAD #MUT #PKU #PA #TYR1 #VLCAD #CUD #GAMT #BIOT #CAH #CH #SCD #CF #SCID #SMA

September is #NewbornScreening Awareness Month. NBS - Maritimes currently screens for #CIT #ASA #CblA #CblB #MUT #GA1 #GALT #IVA #LCHAD #MSUD #MTP #MCAD #MUT #PKU #PA #TYR1 #VLCAD #CUD #BIOT #CAH #CH #SCD #CF #SCID #SMA #CPTI #CPTII #CACT Time for #HCU to be added

September is #NewbornScreening Awareness Month. NBS - Ontario screens for #CIT #ASA #CblA #CblB #MUT #GA1 #GALT #IVA #LCHAD #MSUD #MTP #MCAD #MUT #PKU #PA #TYR1 #VLCAD #CUD #BIOT #CAH #CH #SCD #CF #SCID #SMA #CPTI #CPTII #CACT #GAMT #MPS1H #HCU #CCHD #BA and #PermanentHL

Current data shows that 50% or more of babies with #homocystinuria are missed by #newbornscreening. We need to hear from YOU! 🫵 Head to ➡️ loom.ly/TqDMRIQ & complete the Diagnosis Survey today! #newbornscreeningawarenessmonth #2024NBS #HCU #HopeConnectsUs RARE-X

September is #NewbornScreening Awareness Month. NBS - Alberta currently screens for #CIT #CblA #CblB #MUT #GA1 #GALT #HMG #IVA #LCHAD #MSUD #MTP #MCAD #MUT #PKU #PA #TYR1 #TFP, #VLCAD #CUD #BIOT #CAH #CH #SCD #CF #SCID #SMA Time to add #HCU and #ASA ?

Be sure to register for the next cafe. A full list is available on our home page canpku.org Nous recherchons un barista francophone pour animer des événements. Postulez à [email protected]. #maladiesrare #phénylcétonurie #passirare #CombatPourLesRares #RareAuCanada

Happy #newbornscreening awareness month! Infographic: Since NSO began in 2006... #NBSMonth #infographic