While ALS may be statistically uncommon and is considered a rare disease, today, on Rare Disease Day we recognize and honor the 350 million people worldwide who are affected by rare diseases. Rare diseases do not always receive the attention or support they deserve and yet the total number of people impacted is greater than the entire population of the United States. For those living with ALS, your experience feels anything but rare. Your voice can inspire change and help us move closer to a world without ALS.  

The Power of Personal Stories in ALS Research and Care 

When you share your ALS story, you help influence policies, encourage companies to support the cause, and most importantly, unite the ALS community to make it feel less rare. Turning ALS from fatal to livable—and ultimately curing it—requires robust investment in research, access to high-quality care, and a commitment to ensuring that every person diagnosed with this disease has the best possible chance at treatment. Reducing these resources jeopardizes scientific advancements and directly threatens the well-being of individuals living with ALS, including veterans who are more likely to be diagnosed with this devastating disease. Such advocacy has been instrumental in securing funding from institutions like the National Institutes of Health (NIH), which allocated approximately $6.9 billion to rare diseases research in fiscal year 2023. 

Share Your Story 

In honor of Rare Disease Day, we encourage you to share your stories - we will be featuring some of them in an upcoming blog series to shine a light on the real impact of ALS.  

Some prompts to get you started: 

• Impact: How has living with a rare disease shaped your life or the life of a loved one? 

• Challenges: What obstacles have you faced in seeking diagnosis, treatment, or support? 

• Community: How has connecting with others in the rare disease community influenced your journey? In what ways are you connecting? Online? Social media? Local support groups? 

• Hope: What message would you like to share with others living with ALS, what are you looking forward to? 

By sharing your unique story, you contribute to a larger narrative that policymakers cannot ignore. Your voice can directly influence the allocation of resources toward rare disease research and healthcare services, leading to advancements in diagnostics and treatments that help make ALS livable - and one day could discover a cure. 

Submit Your Story

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog. 

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