Families of India’s first cases of two rare disease patients struggle for inclusion under national policy

While 16-month-old Sera Nile Fay is India’s only known case of Infantile Hypophosphatasia, 14-year-old Taran is the first Neimann Pick Disease patient put on therapy in the country

Afshan Yasmeen   Oct 18,2023 Read More

List Niemann-Pick as rare disease, parents of young patients urge govt

Parents of children with Niemann-Pick disease,are urging the Indian government to include the ailment in the National Policy for Rare Diseases. This would provide financial support and access to the expensive enzyme replacement therapy, Xenpozyme.

Anuja Jaiswal/TNN   Oct 19,2023 Read More

Patients seek inclusion of ASMD as a notified condition in the National Policy for Rare Diseases; call for increased awareness on the rare, genetic condition

Naman Bansal   Oct 19,2023 Read More

Patients seek inclusion of ASMD as a notified condition in the National Policy for Rare Diseases

Newsmantra   Oct 19,2023 Read More

Fighting against rare diseases together

With this collection of real patient chronicles who are on our humanitarian program, as well as those supported by government/institutional funding; we have attempted a glimpse into how the lives of people suffering from such debilitating disorders have transformed.

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