Most people are fascinated by rare things—especially on day like February 29th (Leap Day),which only comes around every four years. There’s a certain fascination behind leap year because it’s rare, which is why on the last day of February, Rare Disease Day takes place, in order to raise awareness about rare diseases that impact the few, but that can help educate many people about the diseases we don’t know much about.
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The 2016 global theme is “Patient Voice,” which recognizes the crucial role that patients play in voicing their needs and promoting change that improves their lives and the lives of their family and caregivers. A rare disease is considered one that affects fewer than 200,000 people. There are over 7,000 rare diseases affecting 30 million Americans and for most, there is no cure.
Challenges People With Rare Diseases Face
- Devastating medical problems and symptoms
- Difficulty getting a proper diagnosis
- Struggle to find information
- Feeling lonely or isolated
- Limited or no treatment options
Rare Disease Day encourages people to host events and educate people on specific diseases that help people understand how this impacts their lives. The National Organization for Rare Disorders (NORD) helps connect people with rare diseases with others just like them, which always helps them cope better.
Many times, patients with rare diseases don’t know where to get the help they need. Between treatments, surgeries, waiting for test results and finding the strength to keep fighting for a better life, this can be overwhelming. They often need to find support groups where they can simply talk about what they’re going through. To learn more, visit www.rarediseaseday.us.