HCU Network America is a nonprofit organization dedicated to supporting patients with homocystinuria (HCU) and finding a cure. This October, the group is organizing HCU Awareness Month. With the goal…
Moving Mountains HCU Conference 2024 June 29-30, 2024 Aurora, Colorado The HCU Network America’s 4th patient-expert conference will be held on June 29-30, 2024, in Aurora, CO. This is an…
Spring Low Protein Cooking Class Online April 1, 2023 at 2:00 PM Join HCU Network America and Chef Amber as she demonstrates for us 3 quick and easy low protein…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
There are many rare or congenital diseases that, without early detection and treatment, can cause serious health issues and complications. For example, early treatment of homocystinuria (HCU) could delay or…
Classical HCU Parent-Caregiver Online Meetup March 4, 2023 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
Classical HCU Patient Virtual Meet-Up February 5, 2023 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with…
Rare X HCU Data Collection Program Facebook Live Chat: Oral Health Survey Webinar November 17, 2022 From short roots to crowding of teeth, patients with various types of homocystinuria experience…
Classical HCU Virtual Meet-Up October 9, 2022 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the…
Classical HCU Parent-Caregiver Online Meetup October 8, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
It’s October, so you know what that means – it’s Homocystinuria (HCU) Awareness Month! The goal of HCU Awareness Month is to raise awareness of homocystinuria throughout the medical…
On September 8, 2022, HCU Network America, a Patient Worthy partner organization, hosted a webinar program titled "Classical Homocystinuria: A Journey to Improve Outcomes Through Newborn Screening Methodology." The webinar…
HCU Heroes Race for Research September 1-30, 2022 Set with the participants convenience, geography and their pace in mind, in 2019 our first race launched with just 14 participants and…
Classical HCU Virtual Meet-Up August 21, 2022 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the…
Classical HCU Parent-Caregiver Online Meetup August 20, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
The HealthWell Foundation is a nonprofit organization with a mission to reduce financial barriers to care for underinsured patients with chronic or life-altering diseases. The foundation assists with copays,…
HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation's "LAND OF THE FREE, HOME OF THE BRAVE" 2021 Conference June 2022 The Land of the Free, Home of the…
Classical HCU Parent-Caregiver Online Meetup May 21, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
Cobalamin Disorders with Homocystinuria April 24, 2022 at 3:00 PM Come join us for our Cobalamin disorders with Homocystinuria virtual educational program. To sign up, click here.
Spring Low Protein Cooking Class Online April 23, 2022 at 2:00 PM Join HCU Network America and Chef Amber as she demonstrates for us 3 quick and easy low protein…
Classical HCU Patient Panel Conversation: The Back to Care Journey Online Event April 2, 2022 at 12:00 PM The journey looks different for each Classical HCU patient. Join us for…
Patient Worthy partner HCU Network America and RARE X, a rare disease patient data service organization, have recently partnered in order to create a registry of patients living with homocystinuria,…
Rare disease research itself is often overlooked in the medical sphere, so it's not difficult to imagine how many singular aspects of rare disease research are forgotten about completely. One…
Classical HCU Parent-Caregiver Online Meetup March 19, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
In a recent news release, enzyme engineering company Codexis, Inc. shared that its product CDX-6512 received both Orphan Drug and Rare Pediatric Disease designations from the FDA. Both designations were…
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