Rare Disease Day 2024: Theme, Significance, History & Facts

Raising awareness to create change for the 300 million people all around the world living with a rare disease is what World Rare Disease Day is all about. In addition to the rare disease patients, the day is also about their families who struggle and suffer while caring for their loved ones. Rare Disease Day is observed every year on the last day of February and was established by the European Organization for Rare Diseases in 2008 to raise awareness for unknown or overlooked illnesses. Rare Disease Day 2024 will be observed on Tuesday, 28 February by individuals and organizations worldwide.

Rare Disease Day 2024 Date

Below mentioned are the upcoming dates for Rare Disease Day for the next 5 years.

Rare Disease Day 202429 February 2024Thursday
Rare Disease Day 202528 February 2025Friday
Rare Disease Day 202628 February 2026Saturday
Rare Disease Day 202728 February 2027Sunday

Rare Disease Day 2024 Overview

EventRare Disease Day
Date28 February 2024
Declared byEuropean Organization for Rare Diseases (EURORDIS)
Observed byWorldwide
Purpose of celebrationTo raise awareness for rare diseases and improve access to treatment and medical care for individuals suffering from these diseases.

Rare Disease Day Significance

Rare Disease Day is not simply an observatory day but a globally-coordinated movement that works towards providing social opportunity, healthcare, and access to diagnosis and therapies for people suffering from a rare disease.

The day plays an important role in building an international rare disease community that is multi-disease, global, and diverse but united in purpose. To mark its significance, it is celebrated on the 29th of February, the rarest day of the year. However, in non-leap years, this day is observed on 28 February.

History of Rare Disease Day

The European Organization for Rare Diseases coordinated and organized the world’s first Rare Disease Day in 2008. The day was also launched in Canada around the same time by the Canadian Organization for Rare Disorders.

February 29 was chosen as the day of observation as it is a rare day that comes only once in four years (leap years only). February 29, 2008 also marked the 25th anniversary of the passing of the Orphan Drug Act in the United States.

The act stimulates the development of drugs for rare diseases. Rare Disease Day went global in 2009 after the National Organization for Rare Disorders mobilized 200 rare disease patient advocacy organizations in the United States and many other countries coordinated activities and promoted the day.

Observation of Rare Disease Day

Focused mainly on the patients of rare diseases, Rare Disease Day is about honoring families, caregivers, healthcare professionals, researchers and clinicians too who work hard for the betterment of these patients. The day urges advocates, individuals, policymakers and industry representatives to take action for those suffering from any rare disease and require immediate attention.

As an individual, you can show your support for the patients and their families by sharing the rare disease colors on social media. You can illuminate buildings, monuments and homes with these colors or can share any experience you might have with others. There is also a Rare Disease Day website that helps anyone interested in campaigning for rare diseases by identifying resources and promoting campaign events.

Check: Important days February

Facts You Should Know About Rare Disease

Here are some lesser-known facts about rare diseases that you should be familiar with.

  1. If less than 200,000 people suffer from any condition, it is is considered as rare.
  2. There are about 7,000 types of rare disease known to the world.
  3. It can take several years to diagnose a rare disease.
  4. Only 5% of rare diseases have treatments.
  5. Some rare diseases affect only one individual in the world.
  6. If all people with rare diseases live in a country, it will be the world’s third-most populous country.
  7. 50% of patients affected by rare diseases are children out of which 30% will not live to see their fifth birthday.
  8. 95% of rare diseases have no Food & Drug Administration-approved drug treatment.
  9. Many pediatric cancers make the list of rare diseases.

Frequently Asked Questions

What is a rare disease?

In the United States, a disease is termed rare if it affects less than 200,000 people. European Union and other countries have similar but slightly different definitions.

Who is affected by rare diseases?

Many (not all) rare diseases are genetic out of which some are apparent at birth while others do not appear until much later in life.

What are the colors for rare disease?

Blue, green, pink and purple are rare disease colors.

What is the theme of rare disease day?

Share Your Colours

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