Avery Biomedical Devices, Inc.

01/29/2026

Did you know that CCHS was briefly known by another name? What we now know as Congenital Central Hypoventilation Syndrome (CCHS) was first reported in a newborn in 1970 and was originally called "primary alveolar hypoventilation" or "Ondine’s curse”. The condition was later named CCHS in 1978, reflecting its cause, an abnormality in the brain's automatic control of breathing, not linked to lung, heart, muscle, or structural neurologic disease.

01/15/2026

About one in every 33 babies is born with a birth defect, according to the Centers for Disease Control and Prevention.

At Arkansas Children’s, the Arkansas Reproductive Health Monitoring System (ARHMS) works to identify and track patterns of birth defects across the state, helping support critical scientific research.

Learn more about ARHMS at Arkansas Children’s: bit.ly/ARHMS, and join the nationwide effort to raise awareness of birth defects, their causes and their impact.

01/09/2026

Ten years ago, in 2016, the CCHS Network was chosen to partner with the National Organization of Rare Disorders (NORD) to develop a Natural History Study of CCHS: the CCHS Network One World Registry (CCHS NOW Registry). Today, the CCHS NOW Registry is helping move CCHS research forward by tracking health data over time, filling critical research gaps, supporting drug development efforts, and strengthening the future of care for our community. For more information, visit: https://cchsnetwork.org/one-world-registry/

01/08/2026

Did you know some individuals with CCHS are diagnosed later in life? In teens or adults with late-onset CCHS, early signs can include excessive daytime sleepiness, morning headaches, or confusion after sleep. These symptoms are often caused by low oxygen levels overnight. In some cases, diagnosis occurs after a fainting episode or complications during surgery or sedation.

01/06/2026

Are you looking for a list of laboratories that offer testing for the PHOX2B gene mutation? There are several laboratories in the U.S. and around the world that offer testing for the PHOX2B gene mutation. Visit our website for a partial list of testing centers in the U.S., Canada, Europe, and Japan.
https://cchsnetwork.org/genetic-testing-centers/

01/06/2026

CCHS has many faces. Affecting approximately 3,000–4,000 individuals worldwide, CCHS occurs across all genders, races, and ethnicities. Every journey is different, but each face represents strength and resilience. 💙

12/15/2025

We offer need-based durable medical equipment grants for individuals diagnosed with CCHS who require equipment not covered by insurance and meet income eligibility requirements. Individuals with CCHS can receive up to $5,000 per year. Learn more about how to apply on our website: https://cchsnetwork.org/cchs-durable-medical-equipment-grant-application/

12/08/2025

🎉 Huge news to celebrate! 🎉
Children’s Hospital Los Angeles (CHLA) has just been named a Rare Disorders Center of Excellence by the National Organization for Rare Disorders (NORD) – a prestigious recognition given to only the top institutions in the U.S. for diagnosing and treating rare diseases!
We at Avery Biomedical are incredibly proud to stand alongside the amazing CHLA team in the fight against rare disorders. Together, we’re bringing hope and advanced care to kids and families who need it most. 💙
Thank you, CHLA, for your relentless dedication – this honor is so well deserved!

The designation acknowledges CHLA’s national leadership in the diagnosis and treatment of rare diseases.

12/03/2025

Today we honor the strength and contributions of over 1 billion people living with disabilities worldwide. As healthcare providers, we commit to:
✓ Accessible facilities & equipment
✓ Clear communication & reasonable accommodations
✓ Dignified, patient-centered care for all

12/01/2025

The average person takes 20,000 breaths per day. For most of us, we never think about those breaths. But, for those with CCHS, breathing is not automatic nor guaranteed.

11/27/2025

Happy Thanksgiving from all of us at Avery Biomedical Devices.

11/20/2025

Did you know that the CCHS Network funds research projects in hopes of finding a cure? One of the research projects awarded by the CCHS Network in 2024 aims to uncover how NTS PHOX2B neurons work and how they receive signals to control breathing. Their findings may lead to a better understanding and the development of new treatments for CCHS and other related breathing disorders. For more information about this project, visit our website: https://cchsnetwork.org/funded-research-projects/