On 24 April 2024, Neurocrine Biosciences, Inc. announced the launch of WHAT THE C@H?!, an educational initiative that aims to close the gap in the need for helpful information about congenital adrenal hyperplasia (CAH) and acknowledges the frustrations and challenges experienced by the community in managing the condition.

WHAT THE C@H?! provides a platform for the congenital adrenal hyperplasia (CAH) community to find educational information, share experiences and learn about current research.

“We are proud to introduce this effort to recognise the significant physical and emotional burden individuals and their families experience living with CAH,” said Eiry W. Roberts, MD, chief medical officer, Neurocrine Biosciences.

“We hope this educational initiative, which was informed by insights from the community, is helpful to those navigating and managing this difficult condition,” she added.

WHAT THE C@H?! was created for adults and adolescents living with CAH, parents of children with CAH and providers who treat the condition. Through a form on the website, people can submit their WHAT THE C@H?! moment, a challenging experience of living with or managing the condition. The website features educational information and offers patients and caregivers a space to share their CAH stories with others.

About congenital adrenal hyperplasia

Congenital adrenal hyperplasia (CAH) is a group of rare inherited autosomal recessive disorders characterised by a deficiency of one of the enzymes needed to make specific hormones.

CAH affects the adrenal glands located at the top of each kidney.

Normally, the adrenal glands are responsible for producing three different hormones: corticosteroids, which gauge the body’s response to illness or injury; mineralocorticoids, which regulate salt and water levels; and androgens, which are male sex hormones.

An enzyme deficiency will make the body unable to produce one or more of these hormones, which in turn will result in the overproduction of another type of hormone precursor in order to compensate for the loss…

Although CAH is not curable, patients can go on to lead normal lives if they receive adequate care and treatment.

Source: rarediseases.org.

“WHAT THE C@H?! provides an empowering and supportive website for individuals living with CAH and parents of children with the condition where they can express themselves, share their stories and learn about other people’s experiences,” said Dina Matos , Executive Director at CARES Foundation, the only organisation in the United States solely dedicated to the congenital adrenal hyperplasia (CAH) community. Founded in 2000, CARES represents approximately 8,000 affected individuals, families and healthcare professionals in the U.S. and more than 70 countries.

“[WHAT THE C@H?!] is a unique educational platform that we feel will encourage the community to be their own best advocates by having active and ongoing conversations with their healthcare providers about their symptoms and treatment plan.” – Dina 

The WHAT THE C@H?! healthcare provider-facing website includes interactive educational resources on current CAH monitoring and management practices, in addition to an overview of the potential of corticotropin-releasing factor (CRF1) receptors in CAH.

Dozens of interviews were conducted with people living with CAH, their family members and healthcare providers, in addition to extensive market research, including 63 patients and 124 healthcare providers, to inform the educational initiative.

For more information and to share your WHAT THE C@H?! moment, visitWhatTheCAH.comand follow the initiative on Facebook:What TheCAH?

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