About Us – CAH Initiative: Together for Patients, Families, and Those Affected

The CAH Initiative is a nationwide contact point for people affected by Congenital Adrenal Hyperplasia (CAH). In addition to the medical and clinical aspects of CAH, we focus in particular on the individual challenges that can only be truly understood and resolved by those directly affected. Our goal is to create a supportive community that advocates for patients, relatives, and others impacted by CAH.

Why Do We Exist?

The CAH Initiative was established to answer the many questions surrounding how to cope with and manage the condition. We understand that CAH is a relatively rare disease and that many affected individuals have felt isolated and left alone for years. That’s why we provide a platform where we can address questions together, support coping processes, and share information.

What Are Our Goals?

Our main goal is to create a forum for sharing information and experiences. To achieve this, we have set up a comprehensive contact list to enable direct communication between those affected. We have also developed an educational brochure that explains CAH in an accessible way across 55 pages and includes personal accounts from patients. In addition, we collect addresses and data that can be shared in response to specific requests from patients—whether for applying for a disability ID card or finding doctors for ongoing care. We also organize regular meetings to foster personal exchange.

Another goal is to organize meetings for patients and their families. We recognize the importance of mutual support and therefore offer a platform where experiences can be shared and new connections made.

In addition, we are committed to representing the social and political interests of patients and engaging in public outreach. We aim to raise awareness of CAH in order to achieve greater acceptance and support in society.

Members and Congenital Adrenal Hyperplasia

The CAH Initiative currently consists of around 500 members from Germany, Austria, and Switzerland. We welcome every new member who wishes to join our community and benefit from shared experiences and information.

Congenital Adrenal Hyperplasia (CAH) is a group of adrenal disorders that result in reduced cortisol production. The condition is caused by an enzyme defect that affects hormone production in the adrenal gland. The adrenal gland is a vital organ that produces hormones such as glucocorticoids, mineralocorticoids, and androgens. In CAH, the production of these hormones is altered, which can lead to various effects.

The severity of the enzyme defect can vary. A distinction is made between classic CAH, which is associated with a severe impairment of hormone production, and non-classic CAH, which represents a milder form of the condition. The CAH Initiative is open to all affected individuals, regardless of the severity of their condition.

We are here to provide support, information, and a network for all people with CAH and their families. Together, we can support one another and work towards a better future.