Together, we are reimagining a healthier future for people living with rare diseases and their families.

Whether you are a person living with a rare disease, a family member, researcher, medical expert, student, or other community member, we want to hear from you.

The 40th anniversaries of the Orphan Drug Act and NORD remind us that every person in the rare disease community has the power to shape the future and make a lasting impact. The anniversary is an opportunity to learn from the past in pursuit of even greater progress ahead. Join us to celebrate 40 years of progress and all that is ahead.

Picture the next ten years. Tell us what you reimagine is possible for yourself, your loved one, and the entire community affected by rare disease:

  • What would make a difference in your rare journey or for those in your life?
  • What change would you like to see for yourself, or for all rare diseases?
  • Share your vision and ideas with NORD and the rare disease community as a video or story using the form below and on social media using the hashtag #ReimagineRare. Tag us so we can reshare and amplify your message.

Share your photos, videos, and ideas. Your submissions may be shared on our community wall, at NORD’s Rare Impact Awards 40th Anniversary Celebration in May, and throughout the year. Together we are strong!

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