Rare Disease Day 2023: "Share Your Colors!"

Rare Disease Day 2023, observed on February 28, is a worldwide healthcare event to raise awareness of rare diseases, their rarity profiles, and their prevention.

Highlights:

Rare Disease Day is observed every year on February 28(or 29 in leap years) - the rarest day of the year
It works towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease
By sharing your colors via social media, events, and illuminating buildings, we aim to change the lives of the 300 million people worldwide

Rare Disease Day is a global event typically observed either on or near the last day of February to bring patients suffering from rare diseases together. It also helps to create a community in which awareness of their rarity profile, their condition, their diagnosis, and their treatment are discussed. This year, World Rare Disease Day 2023 is observed on February 28 ().

Test Your Knowledge on Rare Diseases
Rare or orphan diseases are the least understood of all the categories of chronic diseases. Rare diseases are more common than projected and globally they take away more lives than cancer and HIV combined.

Globally around 350 million people are estimated to live with a rare disease. Currently, there are 7000 rare diseases with newer ones being discovered each year. 80% of rare diseases have a genetic origin. Rare diseases may be single-gene disorders or multiple- gene disorders. Almost 50% of those affected are children and 30% of these children will not live beyond the age of 5. It takes nearly 7 years to diagnose a rare disease. 95% of rare diseases do not have a cure.

‘Rare Disease Day 2023 is a call to people in positions of power to remove the stigma and raise neglected awareness about rare diseases.’
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History of Rare Disease Day

Organized by EURORDIS (The European Rare Disease Organization) and coordinated by 65+ national alliance patient organization partners, Rare Disease Day has aimed to spread awareness of various rare diseases in their respective countries since its inception in 2008.

The National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center were involved in and sponsored these campaigns from 2011 on. Since then, this global observance has touched the lives of affected people and their caretakers and raised awareness about collaborations addressing the novel challenges brought by the advancement of scientific research for new treatments.

First Steps for a Rare Disease Policy in India
Globally, there are 7000 rare diseases and counting. In India, there are nearly 7 crore people affected by a rare disease.

What is a Rare Disease?

According to the World Health Organization (WHO), a disease can be identified as a rare disease based on its epidemiology. The frequency of any rare disease should be less than 6.5-10 per 10,000 people ().

Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patient’s quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

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Unique Facts About Rare Disease

Any disease affecting fewer than 200,000 people in the United States is considered rare (3^✔ ✔Trusted Source
What are Rare Diseases?

Go to source)
In India, a disease is rare if it affects one in every 5,000 Indians or less
There are approximately 7,000 rare diseases affecting between 25 and 30 million Americans
Of the 7,000 known rare diseases, approximately 95 percent have no treatment
Many but not all rare diseases are genetic
All childhood cancers are rare
There are more than 500 types of rare cancers

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Importance of Rare Disease Day

Although all diseases can inflict tremendous suffering on patients, rare diseases pose more significant challenges. The families and caretakers are also affected due to the guilt of not providing proper support for the treatment.

These diseases often involve severe, progressive illness and disability and may lead to premature death. In addition, rare diseases frequently affect more than one organ system and require collaborative research structures.

Furthermore, being very rare, the treating healthcare team often misdiagnoses the patients due to overlapping symptoms seen with more common (non-rare) diseases. For all of the reasons stated above, raising awareness of rare diseases and allocating funding for research would greatly benefit the patients who suffer from them.

Rare Disease Day 2023 Theme

"Share Your Colors!" is the theme for Rare Diseases Day 2023 (a continuation of the theme from 2022) (). It is a call to patients, governments, world leaders, and other interested parties to help remove the stigma associated with patients suffering from rare diseases. This day also serves as a reminder for them to collaborate in order to raise neglected awareness about the challenges that patients with rare diseases face.

How to Celebrate Rare Disease Day?

Spread the Word

: Share posts about Rare Disease Day on social media and inspire friends to raise awareness for rare diseases.

Volunteer

: Every year, thousands of events are organized around the world during February to mark the occasion of Rare Disease Day. Patient organizations, healthcare professionals, researchers, policymakers, and other members of the community organize events. Find events near you, or go to the website and start your own!

Tell Your Story

: Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial to rarediseaseday.Org ().

References:

About Rare Disease Day - (https://rarediseases.org/rare-disease-day/)
About GARD - (https://rarediseases.info.nih.gov/about)
What are Rare Diseases? - (https://www.raregenomics.org/rare-disease-facts)
28 February is Rare Disease Day - (https://www.rarediseaseday.org/)

Source-Medindia