Support Groups – United States
A diagnosis of CAH 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 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:
The Parents of Newborns/Infants/Toddlers Support Group meets monthly over the phone 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 over the phone. 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.
The NCAH Women Support Group meets quarterly over the phone with our two leaders who share insights and their experiences. This group also has a secret Facebook page where members freely ask questions and exchange information.
Secret Facebook Pages are safe environments where those affected by CAH are able to ask questions, share experiences with others who are in the same situation. These pages include one for each state, Newborns, Surgery, Parents of Children with CAH, Parents of Teens/Young Adults, SWCAH Women and NCAH Women. Contact us for information about accessing the pages.
Support group leaders play a vital function in our community. If you are interested in becoming a support group leader in your area, please contact us. Click on your state below to find a support group leader in your area.
For a complete listing of upcoming CARES Foundation support group events, please visit our Event Calendar.
SUPPORT GROUP LEADERS BY LOCATION:
SUPPORT GROUP LEADERS BY SPECIALIZED TOPIC:
The Foundation’s support groups carry the CARES mission of improving the lives of individuals and families affected by CAH, in a very personal way, at the local level through research, education and advocacy. Support groups allow families in a specific location to meet and gain strength through shared experiences and personal stories. Support groups also offer immediate help to families with a new diagnosis, with getting them the right information quickly and connecting them to an established family in the area. For a complete list of upcoming CARES Foundation support group events, please visit our events calendar.
