How I’m Celebrating Rare Disease Day This Year

While Parkinson's isn't considered rare, we can still support our extended family

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by Lori DePorter |

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According to the National Organization for Rare Disorders, rare diseases affect over 300 million people globally. That seems huge, but it encompasses over 7,000 different rare disease communities.

In the U.S., a rare disease is defined as one that affects fewer than 200,000 people. According to the Parkinson’s Foundation, nearly 1 million people have Parkinson’s in the U.S., so it wouldn’t be considered a rare disease.

Still, on Rare Disease Day on Feb. 28, we can be “big brothers and sisters” to the smaller disease communities. Many of these communities don’t have the benefit of celebrity support for new research and greater awareness, nor do they have a broad range of clinical trials to participate in. So for this column, I’m choosing Friedreich’s ataxia (FA) as my “little brother” in order to help spread awareness. 

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Embracing commonalities

According to the National Institute of Neurological Disorders and Stroke, FA is the most common form of hereditary ataxia in the U.S. It affects about 1 in every 50,000 people, making it a rare disease.

Although we who have Parkinson’s don’t share this rare designation with those who have FA, we do share something that I think is more significant: We are both part of the world of diseases whose cures are elusive. It’s important to acknowledge the challenges we all face, and to think about how we can confront them together. 

We also can connect on a level that’s unique: We can laugh and cry together, and vent without judgment. We can learn how to survive together, and allow each other to rest, but never let each other quit. We’re like a family.

Fellow columnist Matthew Lafleur, a friend from the FA community who can finish my sentences, said it best:

Me: “What do you think keeps us going when we want to quit?”

Matthew: “One thing I’ve learned is the importance of connections between people in the disease space. We all know what it’s like to face a daunting challenge every day, so the connections we form with each other are pivotal. I think that’s the way all people work, but it’s really seen across disease communities.”

Visit our Parkinson’s News Forums to let us know what rare disease community you chose to support on Rare Disease Day, and share what you learned about your “little brother or sister.” And make sure to check out the other websites published by our parent company, BioNews.

Note: Parkinson’s News Today 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 another 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 Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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