**4.2 General workflow of Maitri**

Every patient visiting the Department of Genetics and Molecular Medicine was evaluated in two or more sessions as a part of primary evaluation (F**igure 1**).

*Rare Disease Advocacy Groups and Their Significance in Diagnosis, Management, Treatment… DOI: http://dx.doi.org/10.5772/intechopen.88630*

**Figure 1.**

*Flowchart for the working of Maitri.*

Patients were segregated based on the following age groups and advised accordingly.

a.Pediatric age group:

Age 0–5 years: Parental discussions on symptom management, addressing various needs of the child. Refer for clinical follow-up and psychological evaluation of the child prior to school admission.

Age 6–15 years: Addressing psychological needs of the patient. Group discussion programs with teachers, parents, and other healthcare professionals. Address issues faced at school and mitigate it.

b.Adult age group:

Age 16–22 years: Patient and parental psychological consultation to address various psychosocial issues. One-on-one patient meetings with geneticist and psychologist to address puberty-related problems. Reproductive counseling is also given.

Age 23–40 years: Pre-marital, pre-pregnancy genetic counseling, group sessions with other patients and their family to address common issues. Refer for clinical follow-up if needed.

Age > 40 years: Group sessions for patient and families for discussion of symptoms, their management, possible treatment options, and psychosocial problems faced due to the condition. Pre-symptomatic genetic testing and subsequent advice for children of individuals affected with rare diseases.

• Individual patients requiring vocational, behavioral, or occupational therapy are referred for the same

The importance of a rare disease advocacy group at the National and International level has been established by many esteemed clinicians, geneticists, and social workers. However, such groups at a hospital setting are important in a country like India, where there are limited electronic medical records, and there is huge literary and financial disparity in the population, such advocacy groups may contribute to maintaining crucial information for providing better healthcare and support to patient families.
