The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
Joined March 2017
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๐ค Meet the Panelists Monday!
We're featuring the panelists leading the Family Planning Panel and sharing their unique perspectives on navigating family planning, pregnancy, parenting, and life with Homocystinuria. ๐
๐ฃ Register before June 24th: hcunetworkamerica.org/2026-cโฆ ๐ฃ
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โญ Speaker Spotlight Saturday!
Meet Dr. Brian Gilfix, a featured speaker at the 2026 HCUNA Family Conference.
๐ฃ Register before June 24:
hcunetworkamerica.org/2026-cโฆ
#HCUNetworkAmerica #SpeakerSpotlightSaturday #HCUNA2026
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๐จ Conference Hotel Update
Our host hotel for the 2026 HCU Network America Conference is officially sold out for the conference weekend!
Haven't booked your stay yet? No worriesโthere are several hotels close by.
๐ฃ Register before June 24:
hcunetworkamerica.org/2026-cโฆ
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๐ Community Spotlight: Meet David! ๐
At just 11 years old, David Poissot turned his connection to Classical HCU into an award-winning STEM Fair project that helped educate his community about Homocystinuria. ๐
Join us in celebrating this young advocate! ๐๐
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๐ค Meet the Panelists Monday!
This week, we're featuring the panelists leading Exercise and Athletics with HCU.
๐ฌ Will - Classical HCU Patient
โญ Brandon - Dad of Mason (patient with CblC)
๐ก Patrick - Classical HCU Patient
๐ฃ Register before 6.24: hcunetworkamerica.org/2026-cโฆ ๐ฃ
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โญ Speaker Spotlight Saturday!
Meet Ashley Hudson, one of the incredible experts joining us at the 2026 Family Conference.
Don't miss the chance to learn from leading voices in the HCU space.
๐ฃ Register before June 24th: hcunetworkamerica.org/2026-cโฆ ๐ฃ
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โ๏ธ Meet our June HCU Hero: Mason! โ๏ธ
Hailing from Texas, Mason's journey with Cobalamin C is a story of determination, adaptability, and perseverance.
๐ Read Mason's full story
bit.ly/JuneHCUHeroMason
#HCUHero #Homocystinuria #RareDiseaseCommunity #HCUAwareness #HCUStrong
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๐ฃ Time is running out! ๐ฃ
Join us for HCU Network America's 2026 Family Conference๐
Before you pack your bags, make sure you don't miss these important deadlines:
๐จ Hotel Discount Ends: June 17
๐ Last Day to Register: June 24
Register here: hcunetworkamerica.org/2026-cโฆ
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โ๏ธ๐๏ธ The June HCU Herald is here!
This month, we're shining a spotlight on our HCU Hero, Mason from Texas ๐ค โญ His story showcases the strength and resilience of our community.
Dive into the latest updates, resources, and stories: ๐ bit.ly/JuneHCUHerald26
#HCUHerald #HCUHero
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๐ธโจ Spring Virtual Meet-Up โจ๐ธ
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 ๐
๐ Register here: bit.ly/Spring26VirtualMeetUp
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Now enrolling: The Harmony Study ๐
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: bit.ly/HarmonyPhaseIII
#HarmonyStudy #Homocystinuria
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๐ HC&U: A Homocystinuria Podcast episode OUT NOW!
๐ Ben welcomes Zamira, mother of HCU Hero Luciano, to the table! ๐
She shares the story of him living with cblG, a rare inherited disorder that affects vitamin B12 metabolism.
โก๏ธ Listen: hcunetworkamerica.org/hcu-poโฆ
@RARE_X_
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โจWelcome, Elaina Jurecki, to the Medical Advisory Board! ๐
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: hcunetworkamerica.org/elainaโฆ
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โจ A look back at SIMD 2026! ๐งฌ๐
Weโre 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
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๐จ ONLY A FEW DAYS LEFT ๐จ
We are now accepting Request for Proposals for innovative research focused on:
โจ Classic Homocystinuria
โจ Methionine Synthase Deficiency
๐ Application Deadline: May 31, 2026
๐ฒ Scan the QR code or apply today!
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๐โญ๏ธ Readyโฆ Setโฆ LETโS-A GO! โญ๏ธ๐
The 2026 HCU Heroes: Race for Research is loading in! ๐โจ Help Team HCU power up rare disease research and race toward better treatments.
๐ฎ Registration opens June 1
๐
Medal deadline: July 19
๐ Shirt deadline: August 24
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Food for Thought: Bite-Sized Episodes on HC&U ๐๏ธ
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.
โก๏ธhcunetworkamerica.org/hcu-poโฆ
@RARE_X_
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๐ธโจ Spring Virtual Meet-Up โจ๐ธ
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 ๐
๐ Register here: bit.ly/Spring26VirtualMeetUp
Save your spot and come spring forward with us ๐ท
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Now enrolling: The Harmony Study ๐
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: bit.ly/HarmonyPhaseIII
#HarmonyStudy #Homocystinuria
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๐ Congratulations to our World Homocystinurias Awareness Day raffle winners! ๐๐
Thank you to everyone who entered, shared, and supported this yearโs awareness efforts.
Also, a very special thank you to Syntis Bio for supporting our mission and community!
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