It's #HCUAwareness month - Day 11! 💙 As we wrap up our weeklong spotlight on #ClassicalHCU, we'd like you to meet the Hawkins Family (for those who haven't yet!). In this video, you'll learn a bit about siblings Virgil & Annie's journeys so far with #ClassicalHCU. Thank you to Travere Therapeutics for capturing this beautiful family's story! Watch it here ➡️ https://lnkd.in/edREMZuA #homocystinuria #patientstories #HCU #HopeConnectsUs #GoBlueforHCU
HCU Network America
Civic and Social Organizations
Batavia, Illinois 626 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
Degree in Business Marketing and Hospitality Management | Experience in Social Media Marketing, Content Creation, and Email Marketing.
Updates
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Thanks to our racers, supporters & sponsors (Recordati Rare Diseases & Eton Pharmaceuticals, Inc), our #RaceforResearch2024 was a HUGE success!! 🏃♂️ Thank you to all who participated and donated! You raised over $65,000 which will fund research grants for the homocystinurias! 👏 👏 👏 #homocystunria #research #HCU #HopeConnectsUs
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It's #HCUAwareness Month - Day 10! 💙 As a patient or caregiver, YOU can contribute to a better understanding of #homocystinuria and help accelerate #research & new #treatments! Enroll today in our #HCU Data Collection Program, powered by RARE-X! ➡️ https://lnkd.in/e_xceXA4
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It's #HCUAwareness Month - Day 9! 💙 #Homocystinuria impacts everyone differently. Whether you were diagnosed through #newbornscreening, started treatment from birth, or if you've been off treatment due to difficulty or access issues, these all shape how homocystinuria affects you. In this video, Dr. Harvey Levy discusses what a natural history study is and why they are important to patient outcomes. Travere Therapeutics is looking to recruit patients for their natural history study on classical homocystinuria. To learn more, visit: ➡️ https://lnkd.in/eNYVeYWf #homocystinuria #ClassicalHCU #CBSdeficiency #GoBlueforHCU #HCU #HopeConnectsUs
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It's #HCUAwarenessMonth - Day 9! 💙 Classical HCU is often invisible but has many different symptoms. 🔹Today's challenge - share an image of yourself, detailing some of the symptoms you've experienced due to classical homocystinuria! #Homocystinuria #ClassicalHCU #CBSDeficiency #HCU #HopeConnectsUs #GoBlueforHCU
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Thank you flok for helping us observe HCU Awareness Month! 💙
🧬 October is Homocystinuria Awareness Month! We're highlighting Classical Homocystinuria, a rare metabolic condition that affects ~1 in 200,000 Americans. Learn about Classical HCU through the lens of Danae Bartke – whose personal experience compelled her to found HCU Network America, and Landon Skeens – a star student and youth leader in his community. Read their stories at https://lnkd.in/ejy9ySf9 This month, share the blue HCU ribbon to spread awareness and visit hcunetworkamerica.org to learn more about how you can show your support to our HCU community! 💙 #HCUawarenessmonth #goblueforHCU #classicalHCU #flok
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It's #HCUAwareness Month - Day 8! 💙 With 1 in 200,000 people affected, #ClassicalHCU is considered an ultra-rare disease. However, as screening and diagnostics are improved, we may see a higher disease prevalence rate. #homocystinuria #raredisease #CBSdeficiency #GoBlueforHCU #HCU #HopeConnectsUs
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Join HCU Network America and Propionic Acidemia Foundation at the PKU ORGANIZATION OF ILLINOIS annual meeting. We are helping organize and lead the Allied Disorders track! We welcome those living with an inborn error of protein metabolism and their families to our Low Protein Community annual meeting. The day will consist of speakers, engaging breakout sessions, vendor presentations, scholarship winners, and more. Breakfast and lunch with low-protein options will be provided, as will childcare. Register here >https://lnkd.in/gwRTTXM9 #Homocystinuria #MethylmalonicAcidemia #MSUD #PKU #PropionicAcidemia #Tyrosinemia #UreaCycleDisorder #UCD
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It's #HCUAwareness Month - Day 7! 💙 This week, we'll shine a spotlight on #ClassicalHCU! 🔦 #homocystinuria #CBSdeficiency #homocysteine #methionine #lowprotein #lowproteindiet #medicalnutrition #GoBlueforHCU #HCU #HopeConnectsUs
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🚨 Our community meetup is TODAY@ 4pm ET! 🚨 We hope you'll join us - it's not too late to register! ➡️ Register here: https://bit.ly/fall-meetup