Tips for a successful race - #2: ✨ Maximize donations by inviting potential donors to support your team! ✨ Want to support a team through a donation? Head to ➡️ https://lnkd.in/eWHgwyVH PS - it's not too late to sign up to participate in the race! But don't wait - the race kicks off on 9/! #RaceforResearch2024 #homocystinuria #research #HCU #HopeConnectsUs
HCU Network America
Civic and Social Organizations
Batavia, Illinois 599 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
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
2024 graduate with a double major in Marketing and Hospitality Management with a concentration in Events Management
Updates
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We are looking forward to attending #SSIEM2024. We can't wait for all the networking, conversations and new data, including these abstracts from Travere Therapeutics
Today we announced that we will present 2 abstracts in classical #homocystinuria (#HCU) at the Society for the Study of Inborn Errors of Metabolism Annual Symposium #SSIEM2024 taking place next month. #InRareForLife Press release: https://bit.ly/3AL6T39
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With the new school year upon us, many of us will be navigating school accommodations. 🚍 The Vineland 3 assessment is a tool that can provide valuable information about a child's adaptive behaviors, which can help determine the accommodations that will allow the child to thrive in the learning environment. 🎒📒📚 Caregivers, log in to your RARE-X dashboard & complete the Vineland 3 assessment today! ➡️ https://lnkd.in/gCXm78qh #patientexperience #education #raredisease #homocystinuria #CobalaminDisorders #SevereMTHFR #HCU #HopeConnectsUs
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Your #RaceforResearch dollars in action! 🧑🔬 To learn more about this grant & others, visit https://lnkd.in/e_fZhvDe Register today for #RaceforResearch2024 so we can continue funding important research for the homocystinurias! Race kicks off on 9/1! 🚶♀️🏃♂️🚴♂️ ➡️ https://lnkd.in/eWHgwyVH #homocystinuria #research #HCU #HopeConnectsUs
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HCU Network America reposted this
Multilingual Rare Disease Patient Advocate & Engagement Specialist | Mom of a hero with Homocystinuria | Newborn Screening Ambassador
Are you passionate about improving prenatal education and supporting expecting families? Join us for an insightful webinar where we will explore effective strategies to implement newborn screening (NBS) education during the prenatal period. 🔹 Wednesday 8/28/24 | 12:00 - 1:00 pm ET ➡ Register: https://lnkd.in/ed4FAzZx *Presented by the APHL & Expecting Health Education Workgroup #newbornscreening #NBS #prenataleducation
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Tips for a successful race - #1: Personalize your Team's "Mission"! ✨ Personal stories can help maximize donations and allow your donors to understand what their support means to you! ✨ Want to support a team through a donation? Head to ➡️ https://lnkd.in/eWHgwyVH #RaceforResearch2024 #homocystinuria #research #HCU #HopeConnectsUs
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📣 TOMORROW IS THE LAST DAY TO REGISTER & RECEIVE A RACE TSHIRT! September is closing in...don't miss out! Sign up today! 🚶♀️🏃♂️🚴♂️ ➡️ https://lnkd.in/eWHgwyVH #RaceforResearch2024 #homocystinuria #research #HCU #HopeConnectsUs
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A huge congratulations to Elya Courtney, MPH & team for this recognition, and a THANK YOU for the incredibly important work that you're doing to improve the newborn screen for homocystinuria! 💙
A big Thank You to the Association for Diagnostics & Laboratory Medicine for recognizing our manuscript, published in Clinical Chemistry in 2023. This is a project that became near and dear to all of us. We're so glad the community has engaged with our work to multiplex homocysteine into first-tier newborn screening methods - engagement, investment, and increasing visibility are critical to progress for the rare disease community #newbornscreeningsaveslives #protectinghealthimprovinglives HCU Network America Centers for Disease Control and Prevention Austin Pickens, PhD https://lnkd.in/etnYSZSH
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🎙️ New HC&U: A Homocystinuria Podcast episode dropping 8/29!! This time, Ben welcomes Dr. Stephanie Hitti to the table! Specializing in brain development, Stephanie uses this training to evaluate & help manage children with health conditions that affect the brain. Join Stephanie & Ben as they discuss some of the neurocognitive risk factors in children with the homocystinurias, as well as navigating the world of school accommodations! (Ben is a high school teacher and an adult living with HCU, so he'll have plenty of insight to add!) Don't miss it! ➡️ Follow the HC&U Podcast on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or, head to https://lnkd.in/eBf6RW6c and you can catch it there! #podcast #raredisease #backtoschool2024 #specialeducation #504plan #IEP #homocystinuria #HCU #HopeConnectsUs RARE-X
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Your #RaceforResearch dollars in action! 🧑🔬 To learn more about this grant & others, visit https://lnkd.in/e_fZhvDe Register today for #RaceforResearch2024 so we can continue funding important research for the homocystinurias! 🚨 DEADLINE TO REGISTER for a t-shirt is 8/18. 🚨 ➡️ https://lnkd.in/eWHgwyVH #homocystinuria #research #HCU #HopeConnectsUs
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