I was already in touch with Swasti Di (the co-founder of AAS) through social media channels and so became familiar with the NGO. Although I did not personally attend any of the meetings and conferences arranged by AAS, but was fortunate enough to be able to attend them virtually via Zoom. With every session I came to know more about the disease from the many doctors, how to overcome the difficulties of everyday life by counselors and also came to know about the Rare Disease policies made for the benefits of the patients. I am very thankful for the Physiotherapy and speech sessions arranged by the NGO that helps me a lot.