What is ZC4H2
Associated Rare Disorders (ZARD)?
ZC4H2 Associated Rare Disorders (ZARD) is an ultra-rare genetic condition with central and peripheral nervous system involvement caused by a harmful mutation in the ZC4H2 gene.
The ZC4H2 gene is located on the X chromosome and encodes the ZC4H2 protein essential for normal development.
Males and females can both be affected and the symptoms and severity vary greatly among patients. Symptoms can include orthopedic and musculoskeletal conditions and neurological/neuromuscular conditions.
Living with ZC4H2
Associated Rare Disorders (ZARD)
We invite you to read about our families who have generously shared their experience of living with an ultra-rare disease, including the daily challenges and triumphs. We hope the resilience of our loved ones impacted by ZARD inspires you to share their stories.
More ZARD stories to come. Please visit us back again soon…
The life of Joel and Leo
Joel, age 9 & Leo, age 7 are brothers both diagnosed with ZC4H2 Associated Rare Disorders (ZARD). Joel and Leo are often mistaken for twins and although they share many similarities, they have different personalities and preferences. Joel and Leo love classic animated Disney movies and Walt Disney World…
How can you help
those living with ZARD?
Our foundation was started by parents of children with ZARD. We want to help everyone around the world living with ZARD, including our own children and even those who are not yet born.
For this, we need the help of the scientific and medical communities to research and discover ways that will improve our children’s quality of life.
This is our dream…it is a dream that costs large amounts of money, time, and efforts; and we need your help to make it come true.
We ask affected families to please support us by sharing as much information as possible about their children. Information coming from our families is the KEY to improve the quality of life of our children. You can also enroll in the Natural History Study and directly be a part of the research! Click here for more information.
We ask the larger community to help us by contributing financially to our efforts. Research is expensive. All contributions help, no matter how small, to support our research and the dream of a better life for all those living with ZARD.
ZC4H2 Research Foundation, Inc. All rights reserved.
ZC4H2 Research Foundation has been recognized by the Internal Revenue Service as a 501(c)(3) organization. EIN: 87-4577599