Organisation for Rare Disease India (ORDI), a non-profit patient association focusing on improving the health of patients with rare diseases, has taken the initiative to appeal to the state governments to implement individual state rare disease policies as per directions of the national rare disease policy.
The organisation has written letters to the health secretaries, health ministers, chief secretaries and chief ministers of all the 29 states emphasising on the need to expedite the process of providing treatment to rare disease patients by implementing a rare disease policy.
Commenting on rare diseases as a health issue, Prasanna Shirol (Co-Founder & Executive Director, ORDI) said, “Rare diseases are becoming a serious public health challenge. They are often acute and severe and hamper the patients’ daily lives. Majority of the patients suffering from rare diseases are children and they are losing their lives due to various challenges which include delayed diagnosis.”
“Moreover, there are thousands of rare diseases but treatment is available for only some of them. The treatment and supportive care is also beyond the means of most families. Given these issues, we need the governments’ support to promote early, accurate diagnosis and screening programs for rare diseases, including proper rehabilitation and counselling, which can make the patients’ lives less painful,” Shirol added.
Click here to read more.
