Avery Biomedical Devices, Inc.

02/18/2026

Rare Disease Day is Feb 28th!

Rare diseases are rare, but together, we are many. More than 300 million people worldwide live with a rare disease, a population almost equal to the world’s third-largest country. We are two weeks away from Rare Disease Day, let’s stand together to raise awareness, amplify our voices, and support our community.

02/13/2026

Rare disease day is Saturday Feb 28th! A small but impactful way to show support for our CCHS community is with a CCHS Network Firefly Pin!

A small but impactful way to show support for our CCHS community is with a CCHS Network Firefly Pin. This mini symbol sparks conversations, raises awareness, and helps keep CCHS visible wherever you go. Get yours today: https://cchsnetwork.org/buy-your-firefly-pin/

02/12/2026

Avery Biomedical Devices provides the only diaphragm pacer (phrenic nerve stimulator) for pediatric and adult patients with (CCHS) and (SCI). For decades, we have focused on long-term outcomes and strong physician partnerships. It is the only system with FDA-approved indications for both pediatric and adult CCHS and SCI patients, and CE marking in the European Union for these uses.

An overview of the Avery Diaphragm Pacemaker, a phrenic nerve stimulator for adult and pediatric individuals with chronic respiratory insufficiency. By mimic...

02/04/2026

We’re 25 days away from Rare Disease Day! Please join us on February 28th to raise awareness and educate the world on CCHS.

02/02/2026

Jimmy A. Young, MS, RRT, dedicated his career to advancing respiratory care, leaving a lasting impact on the profession. Starting as Chief Inhalation Therapist at Brigham & Women’s Hospital in 1960, he later helped establish the Respiratory Therapy Department at Massachusetts General Hospital and served as an associate professor at Harvard Medical School.

Alongside Dr. Dean Crocker, Young co-authored Principles and Practices of Inhalation Therapy, one of the first respiratory therapy textbooks, helping educate generations of RTs. His leadership extended to the AARC Board of Directors, where he played a key role in shaping the future of the profession.
Though his life was tragically cut short in 1975, his legacy lives on through the Jimmy A. Young Medal, AARC’s highest honor, is awarded to those making significant contributions to respiratory care.

During Black History Month, we celebrate Jimmy A. Young’s dedication, innovation, and profound influence on the respiratory therapy profession. His story is a powerful reminder of the impact African Americans have made in healthcare and beyond.

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/