The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
United States
Joined March 2017
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HCU Network America retweeted
🧬 #SSIEM2026 | Post 4
How much does vitamin B6 response matter in CBS deficiency? A lot.
🌍 E-HOD: 311 patients, 834 visits
🔎 71% diagnosed after symptoms, only 13% by newborn screening
💊 Pyridoxine response: 61% non-responders, 20% partial, 12% complete & 6% extreme responders
⚠️ Non-responders: earlier, multisystem disease
🩸 Extreme responders: may reach adulthood before presenting with thrombosis
👉 Test B6 responsiveness—and don’t continue pyridoxine when there is no benefit.
#Homocystinuria #CBSdeficiency #RareDiseases
🎙️ HC&U: A Homocystinuria Podcast BONUS EPISODE OUT NOW! 💙
Ben welcomes Dr. Baker to the table!
Missed the HCUNA Clinical Trial Education Series? Learn more about the Harmony Trial below.
➡️ lnkd.in/eBf6RW6c
@RARE_X_
@TravereRare
🔬 Learn about the future of HCU research!
Join HCU Network Australia for an online information session exploring the role of clinical trials in advancing new treatment options for Homocystinuria.
📅 Wednesday, July 15, 2026
🕢 7:30 PM AEST
💻 Online
🔗 bit.ly/4vPcgGv
🏙️ Explore Philadelphia! 💙
There's so much to see and do during your conference weekend!
📍 Save this guide for your trip and start planning your Philly adventure!
What are you most excited to check out? 👇
⏰ The countdown is on... just 5 days until the 2026 HCU Network America Conference! 💙
🏙️ Stay tuned tomorrow for our Philadelphia Guide—packed with family-friendly attractions, local favorites, and fun ideas to help you make the most of your conference weekend.
🌟 Meet our July #HCUHero: Patrick from Pennsylvania!
💙 Living with Classical Homocystinuria hasn't stopped him from achieving incredible milestones—including completing his first marathon. 🏅
Read his inspiring story:
hcunetworkamerica.org/patric…
🎙️ HC&U: A Homocystinuria Podcast BONUS EPISODE OUT NOW! 💙
Ben welcomes Sagar to the table!
Missed the HCUNA Clinical Trial Education Series? Learn what clinical trial participation can look like and explore current research.
➡️ lnkd.in/eBf6RW6c
@RARE_X_ @TravereRare
🎆 Red, white, and low protein! ❤️🤍💙
Fire up the grill, gather your friends and family, and celebrate the Fourth of July with festive favorites that fit your low-protein lifestyle.
Wishing our HCU community a safe, happy, and delicious Independence Day this weekend! 🇺🇸✨
🍓 Stars, stripes, stories, and community — the July HCU Herald has arrived! 💙
Grab a slice of watermelon, find a spot under the fireworks, and catch up on everything happening in the HCU community! 🍉✨📬
🔗 bit.ly/JulyHCUHerald2026
🎙 HC&U: A Homocystinuria Podcast BONUS EPISODE OUT NOW!
Ben welcomes Amy, Isaac, and Jacob to the table!
Did you miss the annual World Homocystinurias Awareness Day panel? You're in luck! Host and moderator Ben is releasing it now!
➡️ Listen: lnkd.in/eBf6RW6c
@RARE_X_
Looking for a recipe that's packed with bold flavor? 🌮🔥
Crispy cauliflower, fresh toppings, and your favorite taco fixings make this a fun meal that's perfect for Taco Tuesday.
Save this recipe and let us know what toppings you'd add! 🌱💙
🔗bit.ly/MealPlan_Summer
🍄⭐️HCU Heroes: Race for Research 2026 ⭐️🍄
Whether you're racing solo or creating your own multiplayer team, don't miss it 🏁🎮
💰 Early Bird Pricing Ends in TWO WEEKS
🏅 Register by July 19 for a medal
👕 Register by August 24 for a race shirt
🔗 charity.pledgeit.org/HCURace…
Going food shopping this weekend? 🛒 We’ve got the planning covered.
This week’s meal plan overview is here to help take the stress out of deciding what’s for dinner.
More information here: bit.ly/MealPlan_Summer
#MealPlanning #LowProteinLiving #RareDiseaseCommunity
HCUNA 2026 in Philadelphia is loading 🔄💙
Before you arrive, here’s your quick cheat sheet so you can skip the confusion, jump into the good stuff, and spend more time connecting 🤝 learning 📚 and exploring 🏙️
Registration is officially closed. We can't wait to see you!💛
🎙 HC&U: A Homocystinuria Podcast episode OUT NOW!
Brandon shares the story of his son Mason, who is living with cblC, and how he continues to thrive while participating in a wide range of extracurricular activities and sports.
➡️ lnkd.in/eBf6RW6c
@RARE_X_
📣 It’s the final call 📣
HCUNA 2026 registration closes today ⏳💙
Don’t miss out on the science, the people, and the experience waiting for you in Philadelphia
📣 Register while you can: hcunetworkamerica.org/2026-c… 📣
#HCUNA2026 #HCUConference #Homocystinuria
💙 Thank You to Our 2026 HCU Network America Conference Sponsors! 💙
This wouldn't be possible without the generous support of our sponsors. Your commitment to the homocystinuria community helps make this event a place for education, connection, advocacy, and hope.
🎤 Meet the Panelists Monday!
We're spotlighting the panelists behind It's a Family Affair!
🎤 Mark Lewis, Moderator
💬 Ethan, Brother (cblG)
🤝 June, Grandmother (Severe MTHFR)
⭐ Holly, Wife (Classical HCU)
📣 Register before WEDNESDAY:
hcunetworkamerica.org/2026-c…
🍄⭐️ LEVEL UP! ⭐️🍄
Ready to start your adventure in the 2026 HCU Heroes: Race for Research?
💰 Early Bird pricing ends July 13
🏅 Register by July 19 to earn a race medal
👕 Register by Aug. 24 to receive a race shirt
🔗 Register: charity.pledgeit.org/HCURace…
🍴 HC&U Bite-Sized is back!
In Episode 3, HCUNA Research Coordinator and cblG mom, Brittany Parke, shares insights from her presentation at SIMD and discusses the impact of patient-reported data on rare disease research. 💙🧬
🎧 Listen now:
hcunetworkamerica.org/hcu-po…
@RARE_X_
