Rare Disease Day
Every year on the last day of February, the world comes together to raise awareness for Rare Disease Day. At Nori's Fight, Inc., we are dedicated to shining a light on the millions of individuals affected by rare diseases and advocating for research, support, and hope.
We Care for Rare Summit
In partnership with The Myositis Association and MIHRA, we are hosting the We Care for Rare Summit—a virtual forum dedicated to sharing patient stories and research breakthroughs. This event will bring together experts, advocates, and those affected by rare diseases to drive awareness and collaboration. Lindsay will be sharing her personal journey and insights, highlighting the importance of patient advocacy and research in the rare disease community.
Let’s show up for the rare disease community—together, even while watching apart.
Event Details
📍 Location: Online
🕒 Time: Friday, February 28, 2025 1:00PM - 3:00PM ET
Meet Lindsay Guentzel
Lindsay Guentzel is an award-winning journalist, writer, producer, and podcast host whose work has been featured in The New York Times, CBS Radio, NPR, ESPN, and more. After being diagnosed with Dermatomyositis associated with Antisynthetase Syndrome, she has been sharing her journey to educate, inspire, and support others facing similar challenges. Her resilience and commitment to advocacy make her a powerful voice in the rare disease community.
Lindsay connected with Julia at The Myositis Association conference in Baltimore last year. Since then, they have collaborated on ideas to improve awareness for Dermatomyositis among patients and medical professionals to ensure earlier detection and better care.
Partnering with Nori’s Fight, Lindsay is dedicated to amplifying patient voices and driving change. On February 28th, she is sharing her story at Rare Disease Day 2025.
After watching, keep the conversation going—share on social media what moved you, what resonated, or how you’re inspired to take action. Be sure to tag us and use #NorisFightRDD so we can amplify your voice!
Why Rare Disease Day Matters
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Over 300 million people worldwide are living with a rare disease.
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Many rare diseases are misunderstood, misdiagnosed, or lack effective treatments.
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Increased awareness leads to more research, funding, and resources.
How You Can Get Involved
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Share Your Story: Use #NorisFight and #RareDiseaseDay to share your experiences on social media.
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Attend Our Event: Be part of the We Care for Rare Summit as we come together to raise awareness and support for Rare Disease Day 2025.
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Donate: Your contribution helps fund research, medical support, and advocacy programs. Click here to donate.
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Wear Zebra Stripes: Show solidarity with the rare disease community by wearing zebra print, the official symbol of rare diseases.
Support the Cause
Every action counts! Whether you donate, participate, or simply spread the word, you are helping to create a brighter future for those with rare diseases.
For more information, contact us at info@norisfight.org.
Together, we can make a difference!