Rare diseases can be both life-limiting and life-threatening, and disproportionately affect children. 75% of rare diseases affect children and more than 30% of children with a rare disease die before their fifth birthday. Rare disease patients and their families can face a lifetime of complex care and living with a rare disease can also have a huge impact on someone’s education, financial stability, mobility and mental health. It is vitally important that the voice of rare disease patients is need to be diagnosed early to provide apropriate guidane and treatment.

Now in advanced medical science are globally improving to treat the rare diseases.