Rare Diseases Day falls on 28th of February for the year of 2021
Rare Diseases Day falls on 28th of February for the year of 2021. This day is celebrated to raise the awareness among the public about the rare diseases and the impact of rare diseases on the patients. Rare diseases are diseases that affect a small percentage of people compared to the general population. Due to its rarity many difficulties are faced by the patients in obtaining the necessary treatments.
1 in 20 people is affected by rare diseases at some point in their life, therefore building awareness about rare diseases is very important for the society. Most of the rare disorders do not have a cure and many goes undiagnosed. Celebration of rare diseases day targets to improve knowledge among public and encouraging researchers and decision makers to address the needs of the patients affected by rare diseases.
The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.
The biggest research challenges faced in the field of rare diseases includes provision of necessary infrastructure and facilities needed for quality research. At RemediumOne, we have successfully carried out clinical trials related to rare diseases like Lupus Nephritis, Systemic Lupus Erythematosus, IgA Nephropathy, Blepharospasm, Paroxysmal Nocturnal Hemoglobinuria and Duchenne muscular dystrophy. Sri Lankan Investigators’ are showing great interest in getting involved in rare disease research programmes. Also, the adherence of patients towards protocol visits is high, hence all the rare disease studies conducted in Sri Lanka have produced high quality data.
Indications worked with: Blepharospasm, Paroxysmal Nocturnal Hemoglobinuria, Lupus Nephritis, SLE, IgA Nephropathy, DMD
Number of patients volunteered: 150+
High prevalent rare disease in Sri Lanka: CML, DMD, uCKD