Rare Disease Day 2024: Highlighting Statistics and Patient Stories

Rare Disease Day 2024: Highlighting Statistics and Patient Stories

Rare Disease Day is observed on the last day of February, falling on February 29 during a leap year, the rarest day on the calendar, to highlight the uniqueness of this event.

Rare Disease Day is a global observance held on the last day of February each year that is aimed at raising awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.

Rare Disease Day 2024 falls on February 29 this year as this year is a leap year, making the day even more rare and special.

Despite varying definitions across different countries and regions, a disease is generally deemed to be rare if it affects less than one in 2,000 people.

One of the overarching themes of Rare Disease Day continues to be “Sharing Your Colors,” which encourages people to share their rare disease stories.

The goals of Rare Disease Day include increasing rare disease awareness, promoting research and development, advocating for policies supporting patients and their families for easier access to care and support and helping foster a global rare disease community.

Founded in 2008, the global movement is significant because rare diseases, while individually uncommon, collectively affect millions of people worldwide. In many cases, rare diseases are severe, chronic and life-threatening. Due to their rarity, the conditions often result in challenges such as delayed diagnosis, a lack of medical expertise and few treatment options.

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A Strong Rare Disease Community

For Rare Disease Day 2024, individuals from around the world were brought together in a video to share their stories, hopes and goals.

The campaign provides an opportunity for people from the global and diverse community of over 300 million people living with a rare disease and their families to share their stories and raise awareness about rare diseases.

Submissions spanned from Argentina to India and Bahrain, embodying the diverse experiences of the global rare disease community. Available in more than 60 languages and disseminated worldwide by the 72 National Alliance patient organization partners of Rare Disease Day, the video stands as a testament to the diverse, global community, according to rarediseaseday.org.

Rare Disease Day: Highlights and Stats

Here are some facts and statistics about rare diseases, which affect hundreds of millions of people around the world, obtained from rarediseaseday.org:

  • 300 million people worldwide are living with a rare disease
  • Five percent of the world’s population is affected by a rare disease
  • There are over 6,000 rare diseases identified
  • 72 percent of all rare diseases are genetic
  • 70 percent of genetic rare diseases appear in childhood
  • There are approximately 200 rare cancers
  • One in five cancers is rare and the incidence for rare cancers is less than six individuals per 100,000 a year

How to Participate in Rare Disease Day 2024

Here are some ways you can help raise awareness about rare diseases on Rare Disease Day.

Social Media Campaigns: Share stories, information and posts related to Rare Disease Day using specific hashtags to increase visibility. Rarediseaseday.org has resources and material that can be readily shared on different social media platforms.

Educational Events: Attend or organize webinars, workshops and conferences to educate and share the latest research and policy developments.

Fundraising: Participate in or organize fundraising events to support rare disease research and patient support organizations.

Advocacy: Engage with policymakers and stakeholders to advocate for the needs of the rare disease community.

Continued innovation, collaboration and advocacy are essential to advancing research and improving outcomes for the rare disease community.

Rare Disease Day has not only served as a platform for raising awareness but also as a catalyst for action. Moving forward, the collective resolve and collaboration of the global rare disease community will be crucial in overcoming the challenges ahead, ensuring that every individual affected by a rare disease receives the recognition, support and care they deserve.