How to spread awareness on Rare Disease Day
Let's share our stories to improve understanding of rare conditions
As someone with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria, I’ve endured many difficult moments. It was challenging to obtain a correct diagnosis, access treatment, and find a doctor who specialized in my conditions. The rarity of my blood disorders was the catalyst for me to share my story.
Living with rare diseases requires perseverance and determination, especially since few people are familiar with these conditions. That’s why it’s so important to spread awareness on Rare Disease Day, which takes place Feb. 28. Together, we can help others better understand the challenges we face.
Whether you’re a patient, caregiver, or loved one, there are many ways to celebrate Rare Disease Day. The following are several ways we can support the rare disease community and put a spotlight on our illnesses:
1. Wear striped clothing. Zebras are often used as a symbol for rare diseases because of the old medical adage, “When you hear hoofbeats, think horses, not zebras.” Doctors are taught to first consider more common conditions when diagnosing patients, but sometimes, the answer is a rare condition. Wearing striped or zebra-print clothing is one way to show support for patients and families affected by rare diseases. If you want to take it a step further, share a picture of your outfit online to start conversations and spread awareness.
2. Educate yourself about rare diseases. There is much to learn about these conditions, such as how many there are (more than 7,000 have been identified) and how they affect patients. This knowledge enables you to educate others. The National Organization for Rare Disorders provides a helpful fact sheet with some basic information. Even if we’re familiar with our own disease, we can still learn about others.
3. Share your story. Whether you’re a patient, caregiver, friend, or family member, we all have a story to tell. Opening up about our lived experiences is crucial to raising awareness about rare diseases, the challenges we face, and the beauty of our perseverance.
4. Participate in a fundraising event, such as a walk/run. This is a great way to share more about living rare while moving your body and raising money for rare diseases. There are several events you can join, including the 4th Rare Diseases Run (virtual) and the New Hope Run Club Run/Walk for the Zebra (virtual or in person). You could even host your own event.
These are only four of the many ways to celebrate Rare Disease Day. How do you plan to spread awareness on Feb. 28? Please share your ideas in the comments below. I also encourage you to share about your day on social media to help spread the word.
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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