Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
When is it celebrated?
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.
What is a rare disease?
A disease is considered ‘rare’ if it affects 1 in 2000 people in Europe. In Pakistan the exact statistics are not known; however, the reports are more frequent as compared to the rest of the world.
Objectives
To raise awareness and educate community about the seriousness of the rare diseases.
Beneficiaries
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Building awareness of rare diseases is so important because 1 in 2000 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.
Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Who are the international contributors?
Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organisations who group together several rare disease organisations in a given country or region.
The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 100 countries all over the world in 2020. We hope even more will join in 2021.
Rare Disease Day and Islamia College Peshawar
Khyber Pakhtunkhwa province has population of approximately 36 million. Most of the families prefer to marry within their closer relatives which has greatly enhanced the propagation of autosomal recessive genetic disorders. These genetic diseases might be isolated or present in a group of multiple abnormalities including brain, eyes, ears, lungs, heart, bones, kidneys and skin.
We have engaged BS/MS/PhD students and faculty members from all around the Khyber-Pakhtunkhwa to prepare a research poster explaining the patient clinical diagnosis, molecular testing (if any), and their possible management plan. Centre of Omic Sciences is committed to provide the basic information for the Rare Disease Day purpose and its importance on the public awareness and solidarity with the affectedindividuals. We are also committed to provide awareness to the local community and enrollthese patients in research of MPhil and PhD Scholars to overcome the disease burden in our future generations.
