HCU Network America

The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica

[HCU Network America @HCUAmerica]

☀️ Meet our June HCU Hero: Mason! ☀️

Hailing from Texas, Mason's journey with Cobalamin C is a story of determination, adaptability, and perseverance.

👇 Read Mason's full story
https://t.co/LScrwKlWNM

#HCUHero #Homocystinuria #RareDiseaseCommunity #HCUAwareness #HCUStrong

[HCU Network America @HCUAmerica]

📣 Time is running out! 📣

Join us for HCU Network America's 2026 Family Conference💙

Before you pack your bags, make sure you don't miss these important deadlines:

🏨 Hotel Discount Ends: June 17
📝 Last Day to Register: June 24

Register here: https://t.co/zijADB5sMA

[HCU Network America @HCUAmerica]

☀️🏖️ The June HCU Herald is here!

This month, we're shining a spotlight on our HCU Hero, Mason from Texas 🤠⭐ His story showcases the strength and resilience of our community.

Dive into the latest updates, resources, and stories: 🔗 https://t.co/iAKA95Jqy6

#HCUHerald #HCUHero

[HCU Network America @HCUAmerica]

🌸✨ Spring Virtual Meet-Up ✨🌸

Join us on TOMORROW, May 30th, at 11 AM EST for a virtual gathering filled with connection, community, and conversation as we head into the new season together 💙
🔗 Register here: https://t.co/gDXtIMlroI

[HCU Network America @HCUAmerica]

Now enrolling: The Harmony Study 💚

Travere Therapeutics has announced that they're now enrolling for their Phase 3 Harmony study for #ClassicalHomocystinuria.

Learn more and see if this opportunity may be right for you: https://t.co/XIePIs4prD

#HarmonyStudy #Homocystinuria

[HCU Network America @HCUAmerica]

🎙 HC&U: A Homocystinuria Podcast episode OUT NOW!
💙 Ben welcomes Zamira, mother of HCU Hero Luciano, to the table! 💙

She shares the story of him living with cblG, a rare inherited disorder that affects vitamin B12 metabolism.

➡️ Listen: https://t.co/MIHif0qfgv
@RARE_X_

[HCU Network America @HCUAmerica]

✨Welcome, Elaina Jurecki, to the Medical Advisory Board! 💙

Elaina brings decades of experience in metabolic genetics, nutrition, research development, and patient advocacy.

We are honored to have her expertise and passion supporting us.

Her bio: https://t.co/yCHYeRFHCr

[HCU Network America @HCUAmerica]

✨ A look back at SIMD 2026! 🧬💙

We’re grateful for the opportunity to connect with members of the rare disease and metabolic disorder community, share resources, and continue conversations surrounding homocystinurias research and advocacy.

#SIMD2026 #Homocystinurias

[HCU Network America @HCUAmerica]

🚨 ONLY A FEW DAYS LEFT 🚨

We are now accepting Request for Proposals for innovative research focused on:
✨ Classic Homocystinuria
✨ Methionine Synthase Deficiency

🗓 Application Deadline: May 31, 2026
📲 Scan the QR code or apply today!

[HCU Network America @HCUAmerica]

🍄⭐️ Ready… Set… LET’S-A GO! ⭐️🍄

The 2026 HCU Heroes: Race for Research is loading in! 🏁✨ Help Team HCU power up rare disease research and race toward better treatments.

🎮 Registration opens June 1
🏅 Medal deadline: July 19
👕 Shirt deadline: August 24

[HCU Network America @HCUAmerica]

Food for Thought: Bite-Sized Episodes on HC&U 🎙️

Nicolo, a neurology fellow at Northwestern, shares insights from his AAN poster using RARE-X data to explore key questions in neurology and rare disease research.

➡️https://t.co/MIHif0qN63

@RARE_X_

[HCU Network America @HCUAmerica]

🌸✨ Spring Virtual Meet-Up ✨🌸

Join us on May 30th at 11 AM EST for a virtual gathering filled with connection, community, and conversation as we head into the new season together 💙

🔗 Register here: https://t.co/gDXtIMlroI

Save your spot and come spring forward with us 🌷

[HCU Network America @HCUAmerica]

Now enrolling: The Harmony Study 💚

Travere Therapeutics has announced that they're now enrolling for their Phase 3 Harmony study for #ClassicalHomocystinuria.

Learn more and see if this opportunity may be right for you: https://t.co/XIePIs3RC5

#HarmonyStudy #Homocystinuria

[HCU Network America @HCUAmerica]

🎉 Congratulations to our World Homocystinurias Awareness Day raffle winners! 💙🌍

Thank you to everyone who entered, shared, and supported this year’s awareness efforts.

Also, a very special thank you to Syntis Bio for supporting our mission and community!

[HCU Network America @HCUAmerica]

🩵🌎 LAST CHANCE TO ENTER THE RAFFLE 🌎🩵

You just have a few hours left to enter our World Homocystinurias Awareness Day raffle.
🎟️ Raffle closes TODAY at 6:00 pm EST- don’t miss your chance to win & support the 2026 HCU Conference!
👉 Visit: https://t.co/ctZZDUjgA5

[HCU Network America @HCUAmerica]

💙 Happy World Homocystinurias Awareness Day! 🌍

Thank you to every patient, caregiver, advocate, healthcare professional, researcher, and supporter helping move awareness, research, and progress forward every day.

Want to help support the cause?: https://t.co/ctZZDUjgA5

[HCU Network America @HCUAmerica]

🎟️ The 50/50 RAFFLE CLOSES TOMORROW! 🎉

Support World Homocystinurias Awareness Day and get your chance to win 💸 while making a difference.

💰 50% goes to the winner, 50% supports awareness, research, + educatioN

👉 Enter now: https://t.co/ctZZDUiIKx
#5050Raffle #HCUAwareness

[HCU Network America @HCUAmerica]

🌍✨ REMINDER: panel is TONIGHT at 7pm EST✨🌍

In honor of World Homocystinurias Awareness Day 2026, we’re bringing voices together from across the country to share stories, strength, and support.

Learn more: https://t.co/ctZZDUiIKx

Join: https://t.co/stg2sIVWDD

[HCU Network America @HCUAmerica]

🩵🌎 RAFFLE CLOSES TOMORROW! 🌎🩵

From coffee to a getaway vacation of your choice, there’s something for everyone!

🎟️ Raffle closes tomorrow at 6:00 pm EST— don’t miss your chance to win & support the 2026 HCU Conference!

👉 Get your tickets: https://t.co/ctZZDUjgA5

[HCU Network America @HCUAmerica]

🌍 Hope Connects Us Around the World 💙

✨ Meet Joji, living with severe MTHFR ✨

Follow along as her mom, Zara, shares moments from daily life during their inpatient stay.

Visit: https://t.co/ctZZDUjgA5