Adrenal Insufficiency Resources
Caring for a child with adrenal insufficiency (AI) is a journey. There are publicly available resources, whether you want to connect with communities of parents who have experience caring for a child with AI, or you want to benefit from the nurture of a support group.
The third-party resources cited below are for the reader’s information only. Eton Pharmaceuticals does not endorse and is not responsible for the content included in these resources. In all cases, please consult with your health care practitioner on all treatment matters. These resources are entirely independent of Eton Pharmaceuticals. By continuing to these sites, you agree to the foregoing terms and conditions.
AI Groups and Resources
- Adrenal Insufficiency Coalition
Created by people with AI, this group aims to improve patient care through education and empowerment. Extensive information and patient resources, including: - ALD Connect
Empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care for ALD. - Hoja Informativa de Endocrinología Pediátrica: Insuficiencia Adrenal
Information about Pediatric Adrenal Insufficiency from the Pediatric Endocrine Society in Spanish. - MAGIC Foundation
Provides support for families of children with disorders, syndromes and diseases that affect a child’s growth, including CAH.- Congenital Adrenal Hyperplasia: A Guide for Families (Pediatric Endocrine Society)
English / Hindi / Arabic / Spanish - Growth Charts
- Congenital Adrenal Hyperplasia: A Guide for Families (Pediatric Endocrine Society)
- National Adrenal Diseases Foundation (NADF)
The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life. - Pediatric Endocrine Society (PES)
PES promotes the continuing education of pediatric endocrinologists. Includes information for patients, parents, and families. - The Stop ALD Foundation
Educates the medical profession and the public about adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN) to improve detection, diagnosis, and treatment.
CAH Groups and Resources
- CARES Foundation (CAH)
Works to improve the lives of the congenital adrenal hyperplasia (CAH) community and to provide support, advocacy, education, and research. - Hiperplasia suprarrenal congénita. Una guía para las familias.
Information about congenital adrenal hyperplasia from the Pediatric Endocrine Society in Spanish. - MAGIC Foundation
Provides support for families of children with disorders, syndromes and diseases that affect a child’s growth, including CAH.- Congenital Adrenal Hyperplasia: A Guide for Families (Pediatric Endocrine Society)
English / Hindi / Arabic / Spanish - Congenital Adrenal Hyperplasia (CAH) Parent Support Video (3:32)
- Growth Charts
- Congenital Adrenal Hyperplasia: A Guide for Families (Pediatric Endocrine Society)
- Video: How to Administer Hydrocortisone Injection (English; 2:19)
- Video: Como Administrar Inyección de Hidrocortisona (Spanish; 2:17)
- Wallet-size emergency injection instructions
Instructions on how to give an emergency hydrocortisone injection for your wallet or purse.
Social Media Groups
- ALD Support
Facebook group for families affected by adrenoleukodystrophy (ALD) (English; 1160 members). - Everything Addy
Facebook group for people with all forms of adrenal insufficiency and their family and friends (English; 1,794 members). - Living with Addison’s Disease
Facebook group for people with adrenal insufficiency and their caregivers, friends, and family (English; 9,530 members). - Magic Foundation CAH Parent Support Group
Facebook group for parents of children with CAH (English; 2500 members). - Understanding Adrenal Insufficiency
Facebook page for people with Addison’s disease and their family and friends (English; 2859 followers).
AI Resources for Children
- Understanding Congenital Adrenal Hyperplasia (CAH)
Comic-book-like animated video (10:37) - Addison Crisis
Animated video for children 4+ (1:19) - Adriana’s Adrenal Insufficiency
Picture book - The CAH Wonderclub
Picture book - Minnesota Department of Health
Children’s Resources- “I’m Growing with CAH” picture book (pdf)
- Adrenal Glands Coloring Page (labeled)
- Adrenal Glands Coloring Page (not labeled)
- Thank You Notes
- Emergency Kit Activity Page
