Frequently Asked Questions

About Rare Million

Rare Diseases

Resources

Community

Medical Information

  • Rare Million is a community-driven platform dedicated to empowering people living with rare diseases and disabilities through education, resources, storytelling, advocacy, and connection. Our mission is to ensure that no one navigating a rare diagnosis feels alone.

  • Rare Million was created because living with a rare disease can often feel isolating. Finding trustworthy information, community, and practical resources shouldn't be difficult. We believe every rare story deserves to be seen, heard, and valued.

    • Individuals living with rare diseases

    • People with disabilities

    • Caregivers and family members

    • Healthcare professionals

    • Patient advocates

    • Nonprofit organizations

    • Researchers

    • Anyone wanting to learn more about the rare disease community

  • A rare disease affects fewer than 200,000 people in the United States. While each condition is uncommon, there are more than 10,000 identified rare diseases that collectively affect millions of people worldwide.

  • Approximately 300 million people worldwide live with a rare disease, including an estimated 30 million Americans.

  • Many rare diseases have symptoms that overlap with more common conditions. Patients often experience years of appointments, testing, referrals, and misdiagnoses before receiving an accurate diagnosis.

  • Yes. Most of the educational resources, downloadable templates, directories, and articles on Rare Million are available free of charge.

  • Absolutely. We offer downloadable resources such as:

    • Healthcare Planner

    • Emergency Medical Information Sheet (coming soon)

    • Insurance Appeal Template (coming soon)

    • Accessibility Travel Checklist (coming soon)

  • We regularly review and update resources as new information, treatments, organizations, and research become available.

  • Yes! We believe every story matters. We're always looking to feature members of the rare disease community to inspire, educate, and foster connection.

    To Share Your Story

  • Yes. We welcome opportunities to collaborate with nonprofit organizations, advocacy groups, researchers, healthcare providers, and businesses committed to improving the lives of people with rare diseases.

    To become a partner, please email: sarah@raremillion.com

  • There are many ways to help:

    • Share our resources

    • Subscribe to our newsletter (coming soon)

    • Follow us on social media

    • Share your story

    • Attend community events (coming soon)

    • Volunteer

    • Partner with us

  • No. The information shared on Rare Million is intended for educational purposes only and should never replace advice from your physician or healthcare team.

  • Visit our Rare Disease Directory to explore nonprofit organizations, foundations, advocacy groups, and educational resources organized by condition.