Table 3 Components of advocacy and education.

(i) Designate one team member to serve as a care coordinator to provide the point of contact.

(ii) Development of uniform, standardized educational materials, and professional training modules for affected people and health care

providers dealing with different periods in the life cycle. Such materials would focus on various relevant subjects, using culturally sensitive

terminology and health literacy tools, and would be provided in different common languages. Examples of modules include:

(a) the newly diagnosed infant,

(b) the toddler,

(c) the school-aged child,

(d) the teenage girl,

(e) the teenage boy,

(f) the individual in transition from pediatric to adult care,

(g) the adult woman,

(h) the adult man,

(i) special needs of the patient with atypical genital development,

(j) special concerns of the patient with NCAH,

(k) emergency training for families and patients,

(l) preparing for school and child care,

(m) dealing with discrimination in school, sports, or employment situations,

(n) reproduction and fertility,

(o) identifying psychosocial adjustment issues,

(p) obesity, growth, and bone health,

(q) testicular tumors, self-examination, and fertility,

(r) genetic consequences of CAH,

(s) frequently asked questions.

(iii) Development of a timeline for the delivery of health information to affected people and provision of educational materials to affected

people and their families.

(iv) Development and maintenance of a comprehensive library of materials and web-based activities which can include informational

pamphlets and videos, local support group contact information, brochures from support and advocacy organizations, decision pointers,

and information on informed consent, medical privacy, and patient rights.

(v) Promotion of informal contact among affected people of all ages and medical and support staff through scheduling routine

appointments for adults and children with CAH on the same day, with the aim of shared learning (details provided elsewhere). CCC

evaluations are performed in rooms spacious enough to accommodate those who support patients with CAH during appointments.