Tag: Lysosomal storage disorders
Rare disease patients write to new health minister, demand sustained funding...
Advocates highlight gaps in the National Policy for Rare Diseases implementation and seek urgent attention to save lives
Gaucher Awareness Day commemorated in New Delhi
The event was also a platform to bring patients and families together to raise their collective voice to seek treatment from the central government......................
Patient groups hail govt’s move to expedite rare disease policy formation
Union Health Minister, Dr Harsh Vardhan has directed ministry officials to speed up the process of formulating the National Policy for Treatment of Rare Diseases (NPTRD), in consultation with all stakeholders....................
Sanofi Genzyme observes Rare Disease Day in India
The company said that it stands committed to the cause of supporting patients with rare and debilitating disorders............
Court order gives a ray of hope for treatment of lysosomal...
Six patients suffering from ultra- rare Lysosomal Storage Disorders (LSDs) got interim relief through Delhi high court...
International Rare Disease Day observed in Delhi
Patients of rare life-threatening diseases from across the capital gathered to draw attention to their condition...