February 28 Is Rare Disease Day!
Rare Disease Day, observed on the last day of February every year, is a reminder of the challenges faced by those living with a rare disease. Established in 2008 by EURORDIS (The European Organisation for Rare Diseases), the day serves as a global call to action to raise awareness on rare diseases and their impact on patients and families.
In the United States, a rare disease is a condition that affects less than 200,000 people. Despite their individual rarity, these diseases impact millions worldwide, with an estimated 10,000+ different rare conditions identified to date. Many of these diseases are genetic, chronic, and debilitating. Most of them also lack any effective treatment or cure.
The unique set of challenges faced by rare disease patients is the driving factor of Rare Disease Day. Lack of awareness and knowledge from healthcare professionals can lead to delayed or misdiagnosis. Treatment options can be limiting, causing feelings of isolation and frustration that can overwhelm patients and families. Rare diseases may also be limited in their research funding, hindering progress toward effective therapies.
Rare Disease Day addresses these challenges by highlighting patient experiences. Through this platform, patients, caregivers, healthcare professionals, researchers, and policymakers can come together, share their stories, and advocate for greater support and resources.
This Year’s Events
This year, the event includes over 600 events in 106 different countries. Find events near you, read patient stories and experiences, and learn how to get involved by visiting https://www.rarediseaseday.org/.
One event not taking place this year will be the one co-hosted by the US Food and Drug Administration (FDA) and National Institutes of Health (NIH). Recently, they announced this year’s Rare Disease Day event has been postponed for the coming months.
The NIH plays a huge role in the advocacy and awareness for rare diseases. Through initiatives such as the Rare Diseases Clinical Research Network (RDCRN), the NIH fosters collaboration among researchers and clinicians to improve understanding, diagnosis, and treatment of rare diseases.
While it is disappointing that the FDA and NIH have had to postpone their event, many organizations across the country and world will continue to host their own events. You are encouraged to visit https://www.rarediseaseday.org/category/events to find an event near you.
For more information on specific rare diseases, visit https://checkrare.com/diseases/
