HCU Network America

The Acappella Natural History study is enrolling ages 1-4 with Classical HCU! You may be able to receive payment for your time and travel if your child participates in this study. ➡️ For more info, visit https://lnkd.in/eUsb36Nx

🎙️ New HC&U: A Homocystinuria Podcast episode dropping 7/25!! This time, Ben welcomes Brandon to the table! Brandon's son, Mason, lives with methylmalonic academia w/homocystinuria Cobalamin C. In this episode, we'll hear about how Mason and his family have tackled the challenges presented by vision loss, and how they've turned surviving into thriving! Don't miss it! ➡️ Follow the HC&U Podcast on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or, head to https://lnkd.in/eBf6RW6c and you can catch it there! #podcast #raredisease #cobalamindisorders #CobalaminC #CblC #MethylmalonicAcidemia #lowvision #whitecane #hydroxycobalamin #advocacy #research #homocystinuria #HCU #HopeConnectsUs RARE-X

Cambrooke's low-protein foods are the perfect choice for your summertime cookout!🍴☀️ Visit Cambrooke.com to learn more. *Often we share information from our Network Affiliates - this is not an endorsement of the product.

Our #RaceforResearch 2023 team feature continues with Miles for Marley! 💙 Marley and her family recently attended our #MovingMountains2024 family conference. We chatted with Marley's mom, Aubrey, about why raising funds for #research is so important to their family. Here's what she had to say! Will you join them? Sign up NOW for our Race for Research (🚨 registration ends 8/8!🚨) ➡️ https://lnkd.in/eWHgwyVH #homocystinuria #CobalaminDisorders #CobalaminC #HCU #HopeConnectsUs

🚨 Happening in 1 week! 🚨 Our community meetups are a time to hear important community news/updates and to chat & connect with other patients & caregivers from our HCU community. We hope you'll join us! 💙 ➡️ Register: https://lnkd.in/d7WN7Vrb #homocystinuria #HCU #virtualmeeting #community

Meet our July #HCUHero, Matteo! Matteo was diagnosed through Delaware's newborn screening program with homocystinuria due to Cobalamin C Deficiency. Now 2 1/2 years old, Matteo is a happy and healthy little boy who enjoys basketball, baseball, and football, and enjoys snuggles, and playing with his big sister! 🏀 🏈 📚 👫 Read his full story here: ➡️ https://bit.ly/matteo-cblc #patientstories #raredisease #cobalamindisorders #CobalaminC #CblC #remethylationdisorders #homocystinuria #HCU #HopeConnectsUs

We are excited to introduce you to our newest medical advisor, Dr. Walla Al-Hertani! Thank you, Dr. Al-Hertani, for your passion and dedication to serving the patients of our community! 💙

July is Healthy Vision Month, a month recognized by the National Eye Institute (NEI) to remind people to check their eye health. The month also recognizes our eye care professionals!👨⚕️ 👩⚕️ Let us see things 👀 from YOUR perspective: Complete the Eyes & Vision survey today on our RARE-X Data Collection Program to help drive #research, better #diagnostics & #treatment development! Visit ➡️ https://lnkd.in/gCXm78qh to get started! #patientexperience #eyehealth #vision #raredisease #homocystinuria #CobalaminDisorders #HCU #HopeConnectsUs

Our #RaceforResearch 2023 team feature continues with Team Will for HCU! 💙 ⚾️ Will & his team, who helped to raise critical funds for #homocystinuria research last fall, will lace up their running shoes again this September! 👟 Will you join them? Sign up NOW for our Race for Research (registration ends 8/8!) ➡️ https://lnkd.in/eWHgwyVH #research #fundraiser #HCU #HopeConnectsUs

Start your July celebrations 🎆 with the HCU Herald! ➡️ ➡️ https://bit.ly/july-herald Featuring... - Our #HCUHero, Matteo - Upcoming events - Getting ready for the #HCUHeroesRaceforResearch 2024 - Meet our new Medical Advisor - Listen to the newest HC&U #Podcast episode - Sign AND share our #NewbornScreening petition - See our RARE - X challenge for July #Research #newsletter #Homocystinuria #cobalamindisorders #CblC #podcasts #RareDisease #HCU #HopeConnectsUs