The Haryana government has decided to provide monthly financial assistance of ₹2,750 to patients afflicted by 55 rare diseases, including muscular dystrophy. They will also be included in Chirayu Yojana by providing relaxation in the family income limit.
This was stated by director general, health services, Dr Sonia Trikha Khullar in a meeting held with the officials of Muscular Dystrophy Victims Family Association on Tuesday.
Dr Khullar said that the registration of patients suffering from rare diseases is being done by the health department while the monthly financial assistance will be provided by the SEWA department. Also, patients who are of Haryana domicile and have been diagnosed with a rare disease by any designated Center of Excellence will be included in the Chirayu Scheme. Under the scheme, they will get treatment facility up to ₹5 lakh annually in government and private hospitals. The family income limit under the scheme will not be applicable on such patients.
Dr Khullar said that as per the instructions of the chief minister (CM), the first financial assistance of ₹2,750 will be distributed to the beneficiaries before October 10. She said that for registration of patients suffering from rare diseases, a portal has been started on the website of the health department. According to an estimate, there are about 700 to 1,000 such patients in Haryana who are suffering from one of the 55 rare diseases.
She said that under the National Policy for Rare Diseases 2021 of the Central Government, about 55 types of diseases have been notified as rare diseases, which also includes muscular dystrophy. When symptoms of several neurological problems are present together in the body, such a physical condition is called muscular dystrophy, a genetic disease, in which the muscles of the child gradually become weak after birth. In such a situation, the skeletal muscles that control physical activities become weak and get damaged. In some cases, this disease can be identified at the time of birth, while sometimes it happens that such symptoms appear in the child after entering adolescence.
{{/usCountry}}She said that under the National Policy for Rare Diseases 2021 of the Central Government, about 55 types of diseases have been notified as rare diseases, which also includes muscular dystrophy. When symptoms of several neurological problems are present together in the body, such a physical condition is called muscular dystrophy, a genetic disease, in which the muscles of the child gradually become weak after birth. In such a situation, the skeletal muscles that control physical activities become weak and get damaged. In some cases, this disease can be identified at the time of birth, while sometimes it happens that such symptoms appear in the child after entering adolescence.
{{/usCountry}}The Director General Health said that under the National Policy for Rare Diseases, 2021, 11 medical colleges across the country have been designated as Centers of Excellence for the treatment of rare diseases, which also includes PGIMER Chandigarh and AIIMS Delhi. She said that the Union ministry of health provided an amount of ₹50 lakh per patient to the Center of Excellence for the treatment of patients suffering from these diseases.
She said that an awareness campaign will be run by the health department to create awareness about very rare diseases among the general public so that the patients suffering from these diseases do not have to face problems in getting treatment due to lack of information.