HCU Network America

?? Your Voice Matters! ?? Have you or your family been impacted by newborn screening? We want to hear from you! ?? Researchers are conducting a study to better understand how families benefit from newborn screening, and they need input from parents, patient advocates, clinicians, and newborn screening staff. ? Take the anonymous survey (20 min) ? Share with your network to help reach more voices! ?? English Survey: https://bit.ly/4kwgsFA ?? Spanish Survey: https://bit.ly/43xPSWD Let’s work together to improve support for families navigating newborn screening!?? #familysupport #NewbornScreening #RareDisease #PatientAdvocacy #FamilySupport

?? Meet Danae! ?? Although many of you already know her, we're excited to formally introduce Danae! She is one of our incredible team leaders and a passionate voice for the #homocystinuria (HCU) community. Diagnosed with classical HCU at 10, after her brother's lens dislocation, Danae has dedicated herself to connecting patients and families affected by HCU and advocating for better newborn screening. She lives in the far west suburbs of Chicago with her husband and 6-year-old daughter. Thank you, Danae, for your unwavering commitment and the impact that you make daily. Your hard work and can-do attitude make HCU Network America a huge success! ?? #TeamSpotlight #HCUAdvocate #RareDiseaseAwareness #NewbornScreening #Teamwork #Inspiration

??? Exciting News! ??? We’re expanding access to vital resources! ???? Two essential toolkits are now available in new languages to better support the global HCU and Cobalamin Disorder communities. ?? Homocystinuria Toolkit – Now in Arabic! ????? ?? New Family Diagnosis Guide for Cobalamin Disorders – Now in Spanish! ?????? ?? HCU Toolkit (Arabic): https://bit.ly/43vo5WJ ?? CB Diagnosis Guide (Spanish): https://bit.ly/4bB3lyV #HCU #CobalaminDisorders #RareDisease #PatientSupport

?? Happening in TODAY?? Join us for a Spring Community Virtual Meetup! ??? Come connect, learn, and share with others in the community and receive some updates! ?? ?? ?? Register: https://lnkd.in/eyahPzeN #homocystinuria #meetup #comunity #connect

??? Be Counted! Your Voice Belongs in HCU Research! ???? Your experiences can help unlock new treatments and advance research for homocystinurias. It only takes a few minutes to make a big impact! ??? ? Enroll or update your Rare-X dashboard (5 min) ? Take the Head-to-Toe Survey (15 min) ? Complete all surveys by March 15th! ?? Need help? Contact [email protected] ?? Get started now: https://lnkd.in/e_xceXA4 RARE-X #HCUResearch #BeCounted #RareX #PatientPower #DataDrivesDiscovery

?? Your Brain Tells a Story. ?? Much like our #HCUHero Trace, many individuals with any of the #homocystinurias can experience neurological and nervous system symptoms. From cognitive challenges to nerve-related complications, there is still so much to uncover. If you or a loved one has experienced these symptoms, share your story and help expand our understanding. ?? Head to ?? https://lnkd.in/gCXm78qh to take the Brain and Nervous System Survey ?? *Link is also in our bio* RARE-X #HCU #RareDisease #BrainHealth #Neurology #ResearchMatter #Cobalamin

?? March Madness Fundraiser Alert! ?? Get ready for the most exciting time in college basketball AND support HCU Network America at the same time! ?? Host your own March Madness Squares Pool and raise funds for resources, education, and outreach. Every game is a chance to win! ?? ?? Selection Sunday: March 16, 2025 ?? Set up your pool & start assembling your bracket! ?? Keep the excitement going all tournament long ?? Help drive awareness & support for the HCU community ?? Need help getting started? Email [email protected] for tips! Tag your friends & let’s make this Madness meaningful! ???? #MarchMadness #Fundraiser #HCUNetworkAmerica #RareDisease #GameOn

Preguntas sobre el Programa de Recolección de Datos HCU RareX? Unase a nuestro Horario abierto de consultas para obtener respuestas a sus dudas y aprender como su participación puede impulsar la investigación de la HCU. Proxima sesión: Sabado 8 de marzo 8 am-10am MST Escanee el código QR para unirse

?? Save the Dates! ?? Join us for a heartwarming and supportive Family Meet-Up Day. ?? This special event is designed to unite families and caregivers impacted by homocystinuria (HCU) of all types! It's a wonderful opportunity to connect, share experiences, and build a supportive community. Visit for more details ?? https://lnkd.in/diWSUnVY #community #HCU #Meetup #Florida #Texas

?? Meet Brittany Parke! ?? As the Research Coordinator at HCU Network America, Brittany is vital to our Rare X program and data collection for #homocystinuria. In the fall, she will attend the International Congress of Inborn Errors of Metabolism in Japan on behalf of the community. ?? When she’s not working to drive progress in HCU research, she loves running and spending time outdoors!??♀??? We are incredibly thankful to have her passionate and committed spirit contributing to the cause! ???? #WelcomeBrittany #HCUResearch #AdvocacyInAction #RareDisease