Turners Syndrome

Utah Schools & Students Join Us!

Utah Rare wants Utah schools involved in Rare Disease Day 2015! There are a number of activities you can do with your classes and students of all ages. This becomes a special event for those in your classrooms who have a rare disease, genetic disorder or who are undiagnosed. Educating classmates, staff and parents on your child will help everyone during the school year. Education on the similarities and differences between your child and classmates is a great way to present the  information.

Teachers, staff, students and parents are invited to join our state house event at the capitol in Salt Lake City Utah, on February 27th and at the U of U Health & Sciences Building on February 28th. Register Here: https://utahrare.org/events/

Share your pics with us! Find us on Facebook “Utah Rare” and post your pics! On instagram share your pics and use the hash tag #utahrare  Or email them to us at [email protected] to be shared on social media sites. We want to see your RDD activities!

Link for In School Activities including College, High School, Middle School and Elementary.  http://rarediseaseday.us/take-action-now/in-school-activities/

Elementary School Rare Disease Day Ideas

Download the Rare Disease Day “hand” logo from NORD’s website. Have young children color it and explain that this symbol is being used all around the world for Rare Disease Day. – See more at: http://rarediseaseday.us/take-action-now/suggested-activities/ Make sure you share your pics with us!

As parents/caregivers, arrange a day to visit the classroom. Use activities, photographs and demonstrations to explain similarities and differences in your child and his/her classmates. Present information such as literature/pamphlets/books to help other children understand your child better. The more other’s understand the better they will be able to attend to the special needs of your child. A true understanding from classmates may reduce any hurtful bullying that may occur.

Prepare information/literature/book about your child and share with classmates, teacher & staff at school. Print pamphlets off of the Unique website and share with teachers. This is something great to do at the beginning of the school year.

Have each child in the school/classroom decorate a piece to a paper chain. Each link will represent “Rare/Unique”-they can decorate, share about someone they know who is Rare or something they have learned about rare diseases. Link them across the school or classroom and make sure you share your pics!

Educating classmates, staff and parents on your child will help everyone during the school year. Education on the similarities and differences between your child and classmates is a great way to present the  information.

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 from NIH’s website.

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 form-see link above.

 Suggested Activities for College Students

  • Write your representatives to tell them why rare diseases are important to you
  • Set up a table in the student center to hand out flyers to help spread awareness
  • Organize an event with another interested club such as a pre-medical society or health promotion club and invite students with rare diseases to talk about their experiences and share their story
  • Ask students to take pictures for the Handprints Across America Campaign
  • Volunteer to work at an event in your area
  • Create a photo or video campaign that can be displayed in a public area about living with rare diseases
  • Put up displays throughout classroom buildings
  • Hand out flyers during sporting events
  • Partner with a local hospital to set-up an awareness display in their lobby
  • Buy and sell Rare Disease Day merchandise to peers and professors
  • Join and encourage others to follow us on Facebook and Twitter

Other In-School Activity Day Ideas:

  • Write your representatives to tell them why rare diseases are important to you
  • Download the NORD curriculum for high school science and health teachers and use it in your classroom
  • 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
  • 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
  • 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
Small group of children sitting on the grass having a lesson outdoors. Male and female teacher can be seen. The children look to be listening and enjoying themself.

Please help us show the impact of Rare Disease Day across the nation.

utrareWe invite you to print out this flier with the Rare Disease Day logo and submit a photo of yourself, someone else or a group of people holding it. The purpose is to show people observing Rare Disease Day in a variety of settings across the nation.

child at Utah Rare Day

Rare Disease Day USA, NORD and Utah Rare would love to know what you’re doing for RDD!

We would like to feature the events that are taking place across the United States. This can include any type of event: a company’s lunch-and-learn for its employees, a patient organization’s community awareness event, a research symposium, a concert, a school program, and more.

Rare Disease Day is a grassroots effort and we want to hear how you are participating. This is a day for every member of the rare disease community — patients, caregivers, and those seeking to develop new and better treatments — to join together on behalf of our common goals. Use this form to tell us about events you are planning for 2015 and we will share the information on our events page or through social media.