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Rare Disease Day 2025 Toolkit

Zebra & The Bear Virtual Watch Party Feb 16th

Light Up the Map

Rare Rally for Miracles

Be part of the Rare Rally for Miracles, running through February 28th! Every pin placed on our interactive map represents a Miracle Maker joining the fight for INAD, allowing us to watch the world light up with support. Each contribution builds a path toward a cure, uniting families, friends, and supporters in funding the future for children battling this devastating disease. Every step brings us closer—join the rally today and help make miracles happen!

Resources for School

Rare Disease Day Resources

Perfect for families who want to promote broad awareness about Rare Disease Day and rare diseases as a whole.

  • Handout for Schools:
  • A letter to the school requesting their participation in Rare Disease Day through activities, awareness, or teaching.
    [Download Handout for Schools (PDF)]

  • Handout for Families:
  • A take-home handout for teachers to send with students, helping parents understand Rare Disease Day and how they can discuss it with their children.
    [Download Handout for Families (PDF)]

  • Presentation:
  • A pre-made PowerPoint or Google Slides presentation that can be used in the classroom to teach students about Rare Disease Day and the importance of raising awareness for the rare disease community.
    [Download Presentation (PPT/Slides)]

  • Coloring Sheet:
  • A fun and engaging coloring sheet featuring Rare Disease Day themes to help younger students participate.
    [Download Coloring Sheet (PDF)]

INAD-Specific Resources

Ideal for families who want to raise awareness about Infantile Neuroaxonal Dystrophy (INAD), specifically focusing on its impact and the importance of support and understanding.

  • Handout for Schools:
  • A letter to the school explaining INAD and requesting support for awareness, teaching, or activities that educate students about this rare disease.
    [Download Handout for Schools (PDF)]

  • Handout for Families:
  • A take-home handout for parents that explains INAD in simple, accessible terms and encourages families to learn more and foster empathy for affected students.
    [Download Handout for Families (PDF)]

  • Presentation:
  • A pre-made PowerPoint or Google Slides presentation tailored specifically to teaching students about INAD in an age-appropriate and informative way.
    [Download Presentation (PPT/Slides)]

  • Coloring Sheet:
  • A coloring sheet featuring INAD-specific themes to help younger students learn and engage with the topic in a creative way.
    [Download Coloring Sheet (PDF)]

How to Use These Resources

These tools are designed to make it easy for families to partner with schools in raising awareness and teaching compassion. Simply download the materials that best suit your needs and share them with your school. Together, we can make Rare Disease Day impactful for everyone!

Social Media Resources

Social Media Frames and Banners

Make a statement on Rare Disease Day by sharing your support online! We’ve created a variety of profile frames and banners for families to upload to their social media platforms. These designs are perfect for raising awareness about rare diseases while shining a spotlight on INAD. Join us in spreading the word and inspiring others to take action for our INAD Superstars!

Merchandise

Timeline for Families

Example Image

Rare Disease Day Photo Submissions

Be a Part of Rare Disease Day!

Join us in raising awareness for Rare Disease Day on February 28th by sharing your Rare Disease Day spirit! We’d love to feature you and your family proudly wearing your Rare Disease Day merchandise.Upload your photos using the form below, and help us spread the message of hope, awareness, and action for children affected by INAD and other rare diseases.While we can’t promise that all submitted photos will be used, we are grateful for your support and enthusiasm in making Rare Disease Day unforgettable!📸 Submit your photos below and join us in celebrating the power of the Miracle Maker community!

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Child's Name*
MM slash DD slash YYYY

Your Contact Information

Please provide your contact information so we can reach out with any follow up questions.


Attachments

Please submit as many photos of your child and family as you would like to share with us. The pictures that are most useful are about 2MB in size. This can be accomplished with a smartphone or camera. AT LEAST ONE IMAGE REQUIRED

Drop files here or
Accepted file types: png, jpg, jpeg, mp4, mov, Max. file size: 5 MB, Max. files: 5.



    By filling in the form above, I am giving the INADcure Foundation permission to use my photograph(s) publicly to celebrate my child's birthday as well as to promote the Foundation. I understand that the images may be used in print publications, online publications, presentations, websites, promotional materials, non-profit store items, and social media for the solicitation of contributions and for any other purpose in furtherance of the Foundation’s mission and objectives to support and advance the work of the Foundation. I also understand that no royalty, fee, or other compensation shall become payable to me by reason of such use.

    I also understand that submitting images is not a guarantee that they will be featured.

    Required*