Hyderabad: As much as 90 per cent of patients affected with rare diseases are from middle class, said Eatala Rajender, the Health Minister of Telangana, at the one-day conference on rare diseases here on Friday. The minister also said that the government had formulated a policy for ‘rare diseases’ and that there was a need to maintain a register for rare diseases. Out of 7,000 rare diseases, only 300 diseases are identified.
Minister also launched the website for rare diseases www.rarediseases.in on the eve of World Rare Disease Day on Friday. The Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discovering treatments for it, except by the government granting economically advantageous conditions to creating and selling such treatments. Orphan drugs are ones so created or sold. Most rare diseases are genetic and thus are present throughout the person’s entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30% of children with rare diseases will die before reaching their fifth birthday.[1] With only three diagnosed patients in 27 years, ribose-5-phosphate isomerase deficiency is considered the rarest known genetic disease, according to wikipedia.
Taking cognisance of deaths of youth under 18 in Nalgonda, he said the government was planning to establish mobile labs in the district and constituted a body to focus on this area of healthcare, in coordination with all agencies affiliated to the health ministry.
Source: The Hans India
https://www.thehansindia.com/telangana/hyderabad-health-minister-eatala-rajender-says-need-to-maintain-data-on-rare-diseases-608524
