Rare Disease Day is held on the last day of February every year. As the name suggests, this day is dedicated to all the rare diseases that rarely get public attention. We have days dedicated for individuals suffering from diseases such as AIDS and cancer, but there is least importance given for rare diseases that strike at least 1 in 20 people at some phase of their life. Spreading awareness and making people understand these diseases is the core aim of this day.
This day is practiced throughout the world reaching more than hundreds of thousands of people with around 94 countries participating in these campaigns. The last day of February is aptly declared as ‘Rare Disease Day’ as February is the only month that has rare number of days-28 or 29 days and the first Rare Disease Day happened on Feb 29th 2008, a rare date that occurs only once in four years.
What are Rare Diseases?
There are over 6000 rare diseases that are classified under various disorders and characterized by different symptoms that vary not only from disease to disease but also from patient to patient who has the same disease. 80% of rare diseases have a genetic origin while the rest are due to infections, allergies and environmental causes or are degenerative and proliferative. Read more on how genes determine the health of an individual to some extent at www.firsteatright.com. It is also saddening to know that 50% of rare diseases affect children. Marfan syndrome, Turner syndrome and retinal eye disorder are popular rare diseases. Common symptoms mostly hinder the diagnosis of these diseases leading to misdiagnosis and delayed treatment. These affect the patient’s quality of life as firstly the diseases are not diagnosed accurately on time and secondly, there are no proper cure available for most of these diseases that further add pain and suffering to the affected individual and his/her family. Out of more than 6000 diseases only a few hundred have any treatment.
Every case of rare diseases is different and due to such diversity, research must be conducted on an international level to provide connectivity between researchers, clinicians and patients so that the affected individual can benefit from pooling of resources across the world. While we still need major breakthrough and rare disease patients face a plethora of challenges, mammoth progress is happening every day.
Active Participation of India
India is actively conducting various programs, events and marches on Rare Diseases Day every year. In 2017, events were held across the country, symposiums were conducted, and a film festival was organized. In Bengaluru on Feb 25th, 2018 there was a walk/run organized to bring hope and positivity to all the people suffering from a rare disease and to also provide access to national and international resources.
AVOID FRAUD. EAT SMART.
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Dietitian & Nutritionist Dr. Nafeesa Imteyaz.