HCU Network America

HCU Network America’s Clinical Trial Education Series In two weeks: 🔹 Harmony Global Clinical Trial Live Q&A — April 17 🔗 bit.ly/40mZWPx In one month: 🔹 Clinical Trials in Motion — April 29 🔗 bit.ly/3MRKec Register now and join the conversation. 💙

🎙 HC&U: A Homocystinuria Podcast episode OUT NOW! 💙 Ben welcomes Avery to the table! 💙 Host Ben sits down with Avery, a PhD student who discovered she has classical homocystinuria (HCU) through a free genetic testing program. ➡️ Listen: hcunetworkamerica.org/hcu-podcast/ @RARE_X_

Understanding clinical trials can feel overwhelming — but it doesn’t have to be. 🧬 Part 1 of HCU Network America’s Clinical Trial Education Series is TONIGHT! TODAY: 🔹 Clinical Trials 101 with Sagar Vaidya — March 25 🔗 bit.ly/40jo4Te

Part one of HCU Network America’s Clinical Trial Education Series is THIS THURSDAY. 🔹 Clinical Trials 101 — 03.25 🔗 bit.ly/40jo4Te Coming up: 🔹 Harmony Global Clinical Trial Live Q&A 🔗 bit.ly/40mZWPx 🔹 Clinical Trials in Motion 🔗 bit.ly/3MRKecd

Hope connects us—no matter where we are in the world 💙🌍 Join us on May 18th for World Homocystinurias Awareness Day as we come together as a global community to raise awareness and share stories. Follow along and stay tuned for more details on how to get involved!

Join us THIS EVENING for Advocacy 101: Tell Your Story, Drive Change — Part 2 of our Advocacy Webinar Series 💙 🕕 6:00 PM EST 💻 bit.ly/4kDq16d Hosted by HCUNA , EveryLife Foundation for Rare Diseases, Propionic Acidemia Foundation, and MSUD Family Support Group.

Have questions about RareX? We’ve got answers! 💬 Join our virtual open office hours to learn how to navigate the Homocystinurias Data Collection Program. Drop in during the window—no pressure, just support. 💙 🔗 bit.ly/4biao11 2-3 pm MST 4-5 pm EST 3-4 pm CST

See what's up with our Network Affiliates! - mailchi.mp/hcunetworkamer…

📣🎓 ONE DAY LEFT TO APPLY 🎓📣 The Guthrie-Koch Scholarship is taking applications till tomorrow, March 15th! Have questions or want to apply? Visit flok.org/scholarship/ #scholarship #classicalhcu #education #hope #fundraising

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. Save this post, add the ingredients to your list, and head into the week with a plan already in place. ✔️

Join us in ONE WEEK for Part 2 of our 2026 Advocacy Webinar Series 💙 🗓 Thursday, March 19, 2026 🕕 6:00 PM EST Hosted by HCUNA, EveryLife Foundation for Rare Diseases, Propionic Acidemia Foundation, and MSUD Family Support Group. Zoom 🔗 bit.ly/4kDq16d

🎙 HC&U: A Homocystinuria Podcast episode dropping March 26th! 💙 Ben welcomes Avery to the table! 💙 Host Ben sits down with Avery, a PhD student who discovered she has classical homocystinuria through a free genetic testing program. ➡️ hcunetworkamerica.org/hcu-podcast/ @RARE_X_

We’re excited to be at ACMG Annual Clinical Genetics Meeting! 🧬💙 Come stop by and say hello to the HCU Network America team. We’d love to connect with members of our community, clinicians, researchers, and anyone interested in learning more about the Homocystinurias.

Want to be an adult leader but don’t know where to start? 💡 Applications for the Spring 2026 YARR Leadership Academy close tomorrow! This program is a great opportunity to build leadership skills and grow your advocacy voice. Questions? Email LRomano@everylifefoundation.org

🏀 March Madness Fundraiser Alert! 🏀 📅 Selection Sunday: March 15, 2025 🔹 Set up your pool & assemble your bracket! 🔹 Help drive awareness & support for the HCU community 💙 Not sure where to start? Email info@hcunetworkamerica.org for tips!

Join us for Advocacy 101: Tell Your Story, Drive Change — Part 2 of our 2026 Advocacy Webinar Series 💙 🗓 Thursday, March 19 🕕 6:00 PM EST 💻 bit.ly/4kDq16d ✨ Shape your story for impact ✨ Share key messages that “stick” ✨ Communicate with policymakers confidently

Genetic testing plays a powerful role in the homocystinuria journey 💙🧬 Every data point brings us closer to better treatments and brighter futures. 🧬 Upload here: rare-x.org/homocystinuria/ 🖥 watch more here: bit.ly/GeneticTesting… @RARE_X_

🌟 Meet our March HCU Hero: Avery! 🌟 At 26, Avery’s journey with #classicalhomocystinuria began with years of unanswered symptoms — until genomic sequencing finally gave her answers and a path forward. 👇 Read her full story and be inspired: hcunetworkamerica.org/avery/ #HCUHero

Our HCU advocates showed up strong at Rare Disease Week on Capitol Hill in Washington, D.C. — making sure the #homocystinuria community is seen and heard. This is what advocacy looks like. Real stories. Real impact. Real change. 💪

🚨 2026 Research Grant EOI Now Open 🚨 HCU Network America (with HCU Network Australia and support from CanPKU+) is now accepting Expressions of Interest for research in Classical Homocystinuria and Cobalamin G (Methionine Synthase Deficiency).