Registered rare disease patients in Rajasthan rises to 31

Jaipur: The registration of patients requiring very expensive treatment, who are suffering from rare diseases, have increased to 31 in the state.

The state government had launched Raj-sambal portal (rajsambal.rajasthan.gov.in) to crowd fund rare disease patients recently. They require lakhs of rupees for their treatment annually, which is almost impossible to bear the recurring annual cost of treatment.

Among the four new patients who were registered with the Raj-sambal portal, two are suffering from Hunter syndrome while two others from SMA type-2.

A health department official said that the number has increased from 27 from 31 of registered rare disease patients on the portal created by the state government for crowdfunding to help the patients in getting the expensive treatment.

Since the parents of such rare diseases patients are unable to meet the cost required for their treatment, the Centre had formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July, 2017. According to the officials, implementation of the policy, however, faced certain challenges. Rajasthan is the first state to have its own crowdfunding portal for rare disease patients.