Recently a 20-month-old child waiting for for his treatment to begin at the Capital’s Maulana Azad Medical College, succumbed to Gaucher disease in Delhi.
What is Gaucher disease?
- Gaucher is a rare genetic disorder that affects fat metabolism. It is an inherited disorder that affects many of the body’s organs and tissues.
- There are several types of Gaucher disease based on their characteristic features. The most severe type of Gaucher disease is called the perinatal lethal form.
National Policy for Rare Diseases 2021
- The official portal of rare diseases, maintained by the Ministry of Health and Family Welfare lists 222 patients with rare diseases who are registered for treatment under the National Policy for Rare Diseases, 2021. Three-fourth of all rare disease patients happen to be children.
- The National Policy for Rare Diseases was approved on March 30, 2021 by the then Union Health Minister Dr. Harsh Vardhan.
- The policy envisaged an innovative crowdfunding mechanism to enable the corporate sector and individuals to extend financial support for treatment of patients with rare diseases.
- As per the policy, the annual cost of treatment for some rare diseases may vary from Rs10 lakh to more than a crore each year with lifelong treatment.
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