Support Groups – United States

A diagnosis of congenital adrenal hyperplasia can be overwhelming, frightening and confusing. That’s why patient and caregiver support is a vital function of CARES. We offer support for patients, parents and caregivers via various methods, including Zoom/telephone support, face-to-face meetings and secret Facebook pages. Local and regional support group leaders are available to provide support right in your community. We also offer specialized support which caters to your individual needs.

The following specialized support groups were created to address specific questions or needs:

Parents of CAH Children – Newborn through Age 5  This group meets monthly via Zoom* on the second Thursday night of the month at 9pm (Eastern). Support group leaders who have children with CAH answer questions and offer tips on the many issues surrounding a newborn with CAH.

The Parents of Teens/Young Adults Support Group meets quarterly via Zoom*. Parents can share experiences, advice and stories with each other. Our Teen/Young Adult leader is also available to give insight into living with CAH as a young adult.

Reunión de grupo de apoyo para padres y pacientes con CAH de habla hispana a través de Zoom* Este grupo se reúne regularmente y es para cualquier persona de habla hispana afectada por CAH. Se unirá un médico experto en CAH de habla hispana.

Women with CAH (Classical and Non Classical) This group meets regularly and usually includes at least one of our Support Group leaders.

Teens/Young Adult We think it’s important for young people to meet without parents to discuss personal issues that affect this age specific group (Ages 16-29) regarding their lives with CAH. Our goal is to have at least one young adult or teen Support Group leader. There will be at least 2-3 Zoom* meetings a year. 

Secret Facebook Groups are safe environments where those affected by CAH are able to ask questions, share experiences with others who are in the same situation. These groups are by invitation via our Congenital Adrenal Hyperplasia Support Network Facebook page*. Please follow this page and request entry into the group you are interested in.  Click here to see a list of these private groups, and email us for an invitation, support@caresfoundation.org. *We are currently transitioning from our old support page, CAH Champions. If you prefer to join there as well, please do. 

*For all Zoom meetings, you will have the choice of participating with or without video. 

Most, if not all support group meetings will include a CAH-expert doctor.