Rare diseases

Over 30 million or more people live with more than 6,000 rare diseases diagnosed worldwide with the support of family, friends and community activists.

Rare diseases, affecting between 3.5% and 5.9% of the world's population, are caused by 72% of genetics. Seventy-five percent of genetically rare diseases originate in childhood. Other rare diseases are caused by infections (bacteria or virus), allergies and environmental factors.

The World Health Organization has declared "rare diseases" or "euthanasia" as diseases that affect one or fewer than 1,000 people.
Different countries have defined the number of people affected per 1,000 of the population as 1.0 to 6.4. European countries have defined the disease as a rare disease affecting less than one in 2,000 people.

 As far as India is concerned, there is no definition in the second draft of the National Rare Disease Policy. The Government justifies this by saying that the absence of epidemiological data does not provide a definition of rare disease.

Hemophilia (blood clotting disorder), thalassemia (red blood cell disease), sickle cell anemia, autoimmune diseases, autoimmune diseases, bombshell disease Congenital neuralgia), cystic fibrosis (n There are only 450 diseases reported in Indian hospitals, such as hepatitis, hemangiomas, and certain types of tendon degeneration, including hemodialysis.

The prevalence of the disease, the symptoms of rare diseases characterized by symptoms, is not a relatively common treatment with a diagnosis. The lack of scientific knowledge and quality data often leads to delays in understanding the rare disease. Delayed, life-threatening features affect patients' self-efficacy.

Because rare cures are often not possible in the current environment, the pain and suffering that patients and their families suffer affects their quality of life. In addition, the imbalances in access to quality medicine can cause patients to undergo severe social and financial burdens.

In 2017, the Government of India first issued a policy for Rare Diseases due to a court order after parents of children with rare diseases filed a petition before the Delhi High Court. Last month, the Union Ministry of Health released a draft of the National Policy for the Treatment of Rare Diseases.

The current draft of the "Rare Disease Policy 2017", which will generate Rs 100 crore of capital for treatment, prevention, diagnosis and research development, will be redesigned.
This draft defines three types of rare disease patients. The first type are those who once needed treatment; The second, those requiring treatment that does not have lifelong costs; The third category is those that require a lifetime of costly treatment.
It states that only those in the first category are eligible for funding, and that only 40 percent of those enrolled under the Prime Minister's People's Health Program (Pradhan Mantri Jan Arogyya Yojana) are eligible for treatment in government hospitals.

The cost of drugs for the underlying spinal muscular dystrophy is about Rs 5 crore per year. According to the new draft, these patients will not receive any medical treatment or funding.
According to the new draft of the federal government, those who suffer from rare diseases in the second and third category will not receive any assistance; 200 of them are suing the government in the Delhi High Court.

100 crores of capital was proposed but the deadline was fixed and the withdrawal was not implemented. Likewise, there is no deadline for the current draft to take effect. Due to these reasons, the Delhi High Court has ordered the Union Health and Family Welfare Ministry on 14th of last month to “show your allocation and beneficiary data over the last five years”.

The rare - diversity of rare diseases creates the need for global research involving international experts, researchers - and clinicians. There is a need for international research to ensure that rare diseases can be cured and resources are crossed for clinical trials.