**5. Conclusion**

Hospital-based Rare Disease Advocacy Groups like Maitri are crucial in a number of ways they help in establishing prevalence of rare disorders through the hospital-based registries. They promote awareness, so that every affected individual may be tested for a diagnosis. Such advocacy groups help bring together families with same, similar, or even different rare diseases, so that they can help and support each other. Groups like Maitri also perform a very important role in extended family screening, wherein they identify individuals at risk of developing the disorder and are counseled regarding appropriate testing and preventive measures. It also encourages reproductive genetic counseling for the families with an affected individual, which would help prevent the disorder in the future generations.

Advocacy groups along with policy makers are instrumental in creating public awareness about such diseases. Increase in awareness would make their prevention a public health concern, thus making it mandatory to have definitive screening and preventive strategies in the country. Not only advocacy groups are important for the support of individual families, but they also play a role in mass awareness and prevention of rare diseases.
