Show Your Stripes

Rare Disease Day 2023

This February 28th is a significant opportunity to raise awareness for the millions of people worldwide who are impacted by rare diseases. By learning about these conditions, showing our support, and advocating for research and funding, we can all work together to create a brighter future for the rare disease community.

This year’s theme for Rare Disease Day is “Rare is Many, Rare is Strong, Rare is Proud.” This theme recognizes that even though each rare disease affects a small number of people when you add them all together, millions worldwide are impacted by these conditions. It also acknowledges the strength and resilience of the rare disease community and the pride that patients and their loved ones feel for their unique experiences.

Being a Rare Disease Zebra

The zebra has become a symbol for rare diseases, often used by the rare disease community and its supporters. This is because in medicine, the term “zebra” is sometimes used to refer to a rare or unusual diagnosis. This saying originates from an old medical adage, “when you hear hoofbeats, think of horses, not zebras.” This means that when diagnosing a patient, doctors should first consider the most common and likely diagnoses, like horses, before considering the rare and unlikely ones, like zebras.

The image of a zebra makes a statement that while rare diseases may be uncommon, they are still important and deserving of attention and resources. It’s a way of saying that sometimes the rare and unusual diagnosis is correct, and not dismiss these conditions simply because they are rare.

The zebra has also become a symbol of hope for those affected by rare diseases. It represents the uniqueness of each individual’s experience and the strength and resilience of the rare disease community as a whole. It’s a way of saying that even though we may be rare and different, we are still valuable and deserving of care and support.

What Can You Do?

So, what can you do to help raise awareness for rare diseases? There are a few things you can do:

1. Educate yourself about rare diseases: Learn about some rare diseases that affect people in your community and worldwide. This can help you be more informed and empathetic.
2. Share your support on social media: Use hashtags like #RareDiseaseDay and #ShowYourRare to show your support and raise awareness for these critical issues.
3. Donate to superficial siderosis research: Many advocacy groups and research organizations rely on donations to fund their work. Consider donating to support the important work that they do.
4. Support a rare disease patient or family member: If you know someone who is affected by a rare disease, offer them your support and be there for them as they navigate their journey.

What is a Rare Disease

So, what exactly is a rare disease? A rare disease is any condition that affects a small number of people compared to the general population. In the United States, a rare disease is a condition affecting fewer than 200,000 people. But in many cases, these diseases affect far fewer people than that. In fact, over 7,000 rare diseases have been identified, and many of them are incredibly rare, affecting only a handful of people in the entire world.

Living with a rare disease can be incredibly challenging. Since these uncommon conditions are often misdiagnosed or undiagnosed for years, patients feel lost and frustrated. Many rare diseases are also incredibly complex and can be difficult to treat, leaving patients feeling like there is little hope for a cure or effective treatment.

But despite the challenges, the rare disease community is incredibly resilient. Patients, families, and advocacy groups have worked tirelessly to raise awareness and push for research and funding to help find cures and treatments for these conditions. Rare Disease Day is an opportunity to celebrate their hard work and raise awareness for these important issues.