World Rare Disease Day 2022 — “Sharing Your Colours!”

Highlights:

There are more than 300 million people who are living with a rare disease globally
World Rare Disease Day is celebrated on the last day (28th or 29th in a leap year) of February annually to raise awareness of rare diseases
The day also focuses on bringing a positive change towards the impact of rare diseases on patients’ lives

As per the name, the communities celebrate the World Rare Disease Day on the rarest day of the year — February 28 or 29 to throw light on the need for healthcare resources and research towards the growing burden of rare diseases and their families.

World Rare Disease Day – Rare Diseases Not So Rare
World Rare Disease Day is celebrated annually on the last day of February. It aims to create more awareness about rare diseases among the general public, decision-makers and other stakeholders.

‘The last day (28th or 29th in a leap year) of February is marked as World Rare Disease Day, which aims to bring attentiveness and change towards the burden of rare diseases globally.’
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Rarest of Rare Days

The Rare Disease Day was first started in 2008, February 29th by EURORDIS (European Organisation for Rare Diseases) on the 25th anniversary of the passing of the Orphan Drug Act in the United States.

Along with 23 other countries (including Panama, Colombia, Argentina, Australia, Serbia, Russia, and the People’s Republic of China), the United States also joined this first global observance.

Ever since then, the slogan for the National Institutes of Health (NIH) has been “Patients & Researchers — Partners for Life” that aligns with the need for researchers towards collaborative work (patients, caregivers, families, and advocacy) for better-advancing success of rare diseases’ research.

As the National Organization for Rare Disorders organized 200 rare disease patient advocacy organizations in the United States, the Rare Disease Day went global in 2009. Along with this, other organizations in China, Taiwan, Australia, and Latin America had also led similar efforts in their countries.

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The 2022 Theme

This year 2022, the theme for Rare Disease Day is “Sharing Your Colours,” which highlights the existence of various rare diseases globally.

The global observance strives to address various scientific challenges posed by rare diseases through the development of diagnostics and the advancement of research towards novel treatments.

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Global Measures

Among several rare diseases, Alpha-1 Antitrypsin Deficiency (symbolized by purple color) is also considered as one in over 7,000 rare diseases towards which the Alpha-1 Foundation (along with other collaborative organizations, medical professionals, politicians, and caregivers) aims to raise awareness on this February 28th, 2022.

The NIH plans for holding a virtual event (which involves panel discussions, virtual exhibitors, rare diseases stories, and scientific posters) for the rare disease day on February 28, 2022 (Monday) from 10 a.m. to 6 p.m. EST.

The general public and communities may also join the venture to raise awareness towards rare diseases by wearing or selling out the theme-colored ribbons, jeans, stickers, posters, and digital toolkits.

One may also share various graphics on rare diseases through social media using the hashtags #RareDiseaseDay, and #Alpha1Awareness.

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Facts to Know!

Rare diseases are found to affect 300 million worldwide and 30 million people in the US alone.
Currently, 7,000–10,000 rare diseases affect humans; however, fewer than 5% of rare diseases have an FDA-approved treatment.
One of the concerns for the countries is that among these greater numbers, 75% of the affected rare disease patients are children.
As rare diseases are also difficult to diagnose, it leads to improper diagnosis and treatment.
One of the exceptionally rare diseases in the US is ataxia-telangiectasia (neurodegenerative condition), affecting only about 400 people.
Rare diseases pose an estimated collective cost burden of $1 trillion as per an article co-authored by NCATS Acting Director Joni L. Rutter, PhD.

Connect Yourself on this Rare Disease Day by Posting Your Rare Stories and Messages of Solidarity!

References:

28 February is Rare Disease Day - (https://www.rarediseaseday.org/)
Rare Disease Day at NIH 2022 - (https://ncats.nih.gov/news/events/rdd)
It’s time to get ready for Rare Disease Day 2022! - (https://www.ifopa.org/rare_disease_day)
Rare Disease Day 2022 – Save the Date! - (https://www.nationwidechildrens.org/specialties/rheumatology/rare-disease-day)
Rare Disease Day 2022 - (https://www.alpha1.org/rare-disease-day/)

Source-Medindia