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.
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.
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.
Facts to Know!
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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
