Rare Disease Day 2026
THANK YOU to everyone who participated in Rare Disease Day 2026! We were able to raise over $12,000 for Run H.A.R.D. for Rare Kids this year, and we could not be more grateful for the people and groups who signed up, shared the event, and made donations! We also had the opportunity to attend the New Jersey Rare Disease Day event at the Make-A-Wish castle, learning about and connecting with other resources for rare families and seeing some of our own Fighting H.A.R.D. families there! For those who could not attend, we truly missed you, but we hope you still feel the love and hope from Rare Disease Month! Check out just some of the pictures from this year below, and thank you!
Stay tuned for all things Rare Disease Day 2027--we can't wait!
Stay tuned for all things Rare Disease Day 2027--we can't wait!
Rare Disease Day NJ 2026
Run H.A.R.D. for Rare Kids 2026
Rare Disease Day 2025: The Zebra and the Bear
We had the absolute pleasure of hosting an advanced screening of The Zebra and the Bear, directed by Patrick O'Connor and telling the story of Amber Olsen and her daughter, Willow, who battled an ultra-rare disease. We thank Patrick and Amber for partnering with us for this amazing and important Rare Disease Day event to raise awareness and help others impacted by rare diseases to know they are never alone.
To read more and view the trailer, visit The Zebra and the Bear website.
To read more and view the trailer, visit The Zebra and the Bear website.
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Watch This Video From The Rare Disease Day 2024 Fireside Chat!
We held our first ever Fireside Chat for Rare Disease Day 2024! It was an amazing event with even more amazing panelists. Check out the video below to see the highlights! Thank you to everyone who attended and came together to make this day a huge success!
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Thank you to A3 Digital Media for capturing this for us!
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