Rare Disease Day is annually observed across the globe on the last day of February every year to create awareness to the general public regarding the rare disease and their effects on the lives of the affected people. The International Rare Disease Day is organised by EURORDIS.
The Rare Disease Day 2021 falls on 28th February 2021 which also marks the 14th Rare Disease Day.
- The Rare Disease Day 2020 was observed on 29th February 2020.
- The Rare Disease Day 2022 will be observed on 28th February 2022.
- During the Rare Disease Day 2021, the rare disease community and its supporters come together & shared the message: Rare is many. Rare is strong. Rare is proud!
Background:
i.The rare disease day was launched by EURORDIS and its Council of National Alliances in 2008.
ii.The first Rare Disease Day was celebrated on 29th February 2008.
What is a Rare Disease?
Rare disease is also known as orphan disease, which affects a small percentage of the global population.
Stats:
Statistics show that India has close to ~50-100 mn people affected by rare diseases in a population above 1.3 bn people. Almost 80% of these are children.
Key Points:
i.1 in every 20 people will live with a rare disease at some point of their life.
ii.Most of the rare diseases do not have any cure and many of the diseases are undiagnosed.
iii.Around 300 million people are living with one or more of over 6000 identified rare diseases across the globe.
iv.At present the rare diseases affect around 3.5% to 5.9% of the global population.
v.Around 72% of the rare diseases are genetic and others are the result of bacterial or virus infections.
About National Policy for Treatment of Rare Diseases:
In 2017, MoHFW released a National Policy for Treatment of Rare Diseases, subsequently replaced by a draft release in January 2020, for treatment of approximately 450 ‘rare diseases’.
The elusive policy for rare diseases in progress needs to address the immediate requirement of a centralised registry under ICMR, and that defines the three categories of rare diseases—
(a) requiring one-time but curative treatment,
(b) diseases that require long-term treatment but where the cost is low, and
(c) those needing long-term treatments but require high cost.
The draft in existence has mentioned that financial assistance will be provided for rare diseases that run up to Rs 15 lakh that but only to those patients that have curative therapy and fall under Rashtriya Arogya Nidhi scheme or PMJAY.
