It's #HCUAwarenessMonth - Day 29! 💙 Let's recap! 🔁 #CobalaminDisorders Check out this storybook, Time for a Shot, available *free* in both English and Spanish! ➡️ To download & to check out our other resources for #Cbl disorders, visit: https://lnkd.in/g8s_n7rJ #HCUAwareness #homocystinuria #CobalaminDisorders #treatment #HCU #HopeConnectsUs #GoBlueforHCU
HCU Network America
Civic and Social Organizations
Batavia, Illinois 639 followers
Our mission is to help patients with HCU and related disorders manage their disease and to find a cure.
About us
HCU Network America strives to inform and provide resources for patients and families, create connections, influence state and federal policy, and support advancement of diagnosis and treatment for HCU and related disorders.
- Website
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https://linktr.ee/hcuna
External link for HCU Network America
- Industry
- Civic and Social Organizations
- Company size
- 2-10 employees
- Headquarters
- Batavia, Illinois
- Type
- Nonprofit
- Founded
- 2016
Locations
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Primary
Get directions
15 S Mallory Ave
Batavia, Illinois 60510, US
Employees at HCU Network America
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Danae' Bartke
Executive Director at HCU NETWORK AMERICA
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Raenette Franco
CEO at Compassion Works Medical - Medical Food Reimbursement Consultant
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Liz Carter
Multilingual Rare Disease Patient Advocate & Engagement Specialist | Mom of a hero with Homocystinuria | Newborn Screening Ambassador
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Gabrielle Lewis
Degree in Business Marketing and Hospitality Management | Experience in Social Media Marketing, Content Creation, and Email Marketing.
Updates
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It's #HCUAwarenessMonth - Day 28! 💙 Let's recap! 🔁 What is #ClassicalHCU? In this video, Dr. Harvey Levy discusses classical homocystinuria, the biochemical pathway involved, potential complications, and treatment. #HCUAwareness #homocystinuria #CBSdeficiency #HCU #HopeConnectsUs #GoBlueforHCU
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Anna and her daughter Juana (who lives w/ #ClassicalHCU) along with other parent/patient advocates of Inborn Errors of Metabolism, attended the SLEIMPN XIII Latin American Congress on Inborn Errors of Metabolism and Neonatal Research! The event took place last week in Punta del Este, Uruguay (Fun fact: Juana is the 1st diagnosed case of HCU in Uruguay!), and it was an excellent opportunity for families to share their experiences and connect with researchers and specialists of IEMs! We're so proud of Anna and Juana for their tremendous advocacy efforts, which are already paving the way for improvements to diagnostics and treatment access in Uruguay and Latin America! 💙 💪 #SLEIMPN2024 #SLEIMPN #advocacy #homocystinuria #HCU #HopeConnectsUs #GoBlueforHCU
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Brittany Parke, mom of a little boy who lives with homocystinuria Cobalamin G, shared her family’s newborn screening story and talked about the importance of ensuring that every baby with homocystinuria is identified at birth. 💙 #HCUAwarenessMonth #HCUAwareness #APHLNBS #newbornscreening #homocystinuria #cobalamindisorders #cblG
Newborn screening can undoubtedly save lives, but according to the four moms who spoke on the 2024 APHL Newborn Screening Symposium’s parent/patient panel, improvements need to be made. Our latest blog post highlights their stories and offers their insights into how newborn screening can be made better for all babies and the families who love them. Read more: https://buff.ly/4eXOzDf #APHLNBS
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It's #HCUAwarenessMonth - Day 25! 💙 Today is our wrap-up of #SevereMTHFR spotlight week! 🔦 What better way to do so than to share the story of the incredible Amy! Amy was diagnosed with homocystinuria due to MTHFR deficiency in 2022, and this summer, Amy and her dad attended our Family Conference in Colorado! ➡ Read Amy's story here:https://lnkd.in/g3MRDXwU #HCUAwareness #homocystinuria #PatientStory #HCU #HopeConnectsUs #GoBlueforHCU
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This past week at the APHL - Association of Public Health Laboratories Newborn Screening Symposium in Omaha, NE, Carla Cuthbert, Chief of the Newborn Screening and Molecular Biology lab at CDC, was awarded the prestigious Harry Hannon Laboratory Improvement Award in Newborn Screening. HCU Network America would like to congratulate and thank Dr. Cuthbert and her team for their incredible contributions to improving Newborn Screening, particularly their work in developing an improved methodology for the #NBS for #homocystinuria. To learn more about the methodology, visit: https://lnkd.in/eKgF_FYa #APHLNBS | Centers for Disease Control and Prevention
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We're up to 1⃣0⃣6⃣ enrollees in our HCU Data Collection Program! Of the 7⃣1⃣ participants who've completed the introductory "Head to Toe" survey, here are the top 5⃣ domains/areas that seem to be most impacted by #HCU. Have YOU completed the "Head to Toe" survey yet? If not, your data is incomplete and we're unable to use your valuable insights! Head to ➡️ https://lnkd.in/e_xceXA4 & complete the "Head to Toe" survey today! RARE-X #homocystinuria #research #patientexperience
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🎙️ New HC&U: A Homocystinuria Podcast out NOW! Ben welcomes twin brothers Vicente & Victor, and Valerie, all adults living with #ClassicalHCU. They'll talk growing up with HCU, Family planning, work, and advice to younger patients and families. You won't want to miss it!!! ➡️ Catch the HC&U Podcast on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or, head to https://lnkd.in/eBf6RW6c #podcast #homocystinuria #HCU #HopeConnectsUs #raredisease #metabolicdisorders #lowproteindiet #lowprofile #lowprotein #medicalformula
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It's #HCUAwarenessMonth - Day 24! 💙 Continuing with our spotlight on #SevereMTHFR, 🔦 listen as Grace, mom of Carson, describes their diagnosis story, treatment, successes & challenges, and hopes for the future. #HCUAwareness #homocystinuria #PatientStory #HCU #HopeConnectsUs #GoBlueforHCU
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It's #HCUAwarenessMonth - Day 23! 💙 Homocystinuria due to #SevereMTHFR is incredibly #rare - there are currently fewer than 40 cases described worldwide! 🌎 #HCUAwareness #Homocystinuria #homocysteine #methionine #HCU #HopeConnectsUs #GoBlueforHCU
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