Conference inaugurated to mark “World Rare Disease Day”
3 weeks ago Shruti Goel 0
Union Minister for Health and Family Welfare, Shri J.P. Nadda inaugurated the one-day Conference to mark “World Rare Disease Day” today in Delhi. The inauguration was done in the presence of Union Minister of State of the Ministry of Development of North Eastern Region (DoNER), MoS PMO, Personnel, Public Grievances & Pensions, Atomic Energy and Space, Dr Jitendra Singh.
On this occasion, a newsletter was also released published by the “Indian Organization of Rare Diseases”. The Secretary of Ministry of Health and Family Welfare, Ms Preeti Sudan and President of “Organization for Rare Diseases India” (ORDI), Dr Ramaiah Muthyala began the conference by lighting the ceremonial lamp. They were also joined by two Union Ministers. J.P. Nadda spoke on the occasion, disclosing that the government has formulated a national policy for the “rare diseases”. Also, preparation of a Registry of rare diseases initiated by the Health Ministry is already under process. The government is ready to give full support for the patients suffering from rare diseases in India by providing cost-effective management and investigation facilities. Although the pervasiveness of these diseases was very low, it is commendable that the government has constituted a body to focus on this area of healthcare, both directly by the Health Ministry as well as indirectly by other agencies affiliated with the Ministry.
On this occasion, Dr Jitendra Singh said that it is an irony that these “rare diseases” are rarely discussed. He even pointed out the reason to this that the health providing agencies and the health care system are already busy dealing with the more prevalent diseases. Therefore these rare diseases mostly of genetic origin or existing from birth are hardly prevalent to about 7%. Our Country rarely possesses any literature for these diseases and most of the available inferences are from Western authors. Citing an example, he said that in the USA a disease was marked as “rare” if it affects less than two lakh population, whereas in Europe a particular disease was categorised as “rare” if it affected not more than 5 people per 10,000 population. Therefore, he said that there is an urgent requirement of compiling Indian data for these diseases, based on the strange epidemiological, phenotype and other factors unfamiliar to India.
Dr Jitendra Singh also said that from the past three decades in India, the diseases which were termed as “rare” have now suddenly become much prevalent spreading widely throughout the country. Dr Ramaiah also spoke on this occasion requesting the Government for significant support to carry forward the research and also the lifelong care of the patients necessary for these diseases.
“Rare diseases” may be related to various factors such as genetic disorders, chromosomal disorders or disorders occurring in childhood with lifelong lasting effect. Ms Preeti Sudan presented a detailed account of the various steps taken since 2017 to formulate a comprehensive policy, focusing on these factors relating to the “rare diseases”.