Days To Go




In-School Activities

Hosting a Rare Disease Day event in your local school is a great way to commemorate the day and raise awareness in your community. Below are some suggestions for all school-age students.


High School Curriculum Project

A curriculum supplement on rare diseases for high school biology classes has been developed by a genetic counseling master’s degree student in collaboration with NORD. This curriculum contains background information for teachers and creative, flexible classroom activities to promote active learning. The activities focus on advancing scientific understanding of rare disorders; promoting compassion, empathy and respect for people with different abilities; developing critical thinking skills; and preparing students to make informed decisions as citizens. Read the Rare Disease Curriculum – Introduction.

If you would like to access the full curriculum, please fill out this form and it will be emailed to you.

Middle School Rare Disease Curriculum

The National Institutes of Health (NIH) has created a curriculum supplement for Rare Diseases and Scientific Inquiry targeted at grades 6-8. According to the NIH website, students explore how scientists use inquiry to research rare diseases and treatments and to further understand the workings of the human body. The supplement contains two weeks of lessons that are easily integrated into the curriculum and are aligned to national and state standards. You can learn more on the NIH website.

Other In-School Activity Ideas:

  • Have an assembly about Rare Disease Day. Ask NORD if there is an organization in your area that might be able to provide a speaker.
  • Have students watch “A Brave Heart: The Lizzie Velasquez Story,” a documentary on how a woman with a rare congenital disease who was bullied online for her appearance, became a motivational speaker and author of two very inspirational books.(Documentary release date: March 14, 2015).
  • Ask students to wear a picture badge of a person with a rare disease with their first name and their disease state. The picture can be of the person or a picture for the person. Ask students to wear the badge around their neck and share information about the person and thier disorder with friends and teachers.
  • Provide each student with an index card with the name of a rare disease. Have the student research the disease and write a brief description on it on the card. Display all the cards in a central location such as the school library.
  • Ask students if they know anyone living with a rare disease and, if so, to write a paragraph about how the rare disease affects that person’s life. Make a scrapbook with all the stories.
  • Hand out printable coloring pages located on the Press Kit and Resources page of the Rare Disease Day website.
  • Ask children to trace their hands, cut out the hand, color it in, and then write the name of one of the 7,000 rare diseases on the hand. Hang up all of the cut out hands on a bulletin board or a wall to raise awareness for Rare Disease Day.
  • Invite a local pediatrician or other physician, or a nurse, with knowledge of rare diseases to speak.
  • During daily announcements, say a quote or short statement to remind the students of Rare Disease Day
  • Post information on bulletin boards
  • Have a Student Information Table at lunch
  • Hand out beads in a school assembly, and give 1 of every 10 students a bead of a different color to represent the 1 in 10 Americans with rare diseases