About World Rare Disease Day
World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families. The 8th annual World Rare Disease Day will be held on Friday, February 28, 2015. On this day, various activities take place in the United States, Europe, Russia, Japan and elsewhere around the world.
How You Can Help Students Get Involved
- Invite students to forgo their school uniform and wear jeans to further represent “Jeans for Genes” Day
- Give each student a denim ribbon to wear for the day.
- Hand out our “rare facts” sheet.
- Allow a student with a rare disease to voluntarily share their story of what their disease is, how they were diagnosed and how this disease affects their day to day life.
For Younger Students, Involve Parents
Elementary School: Parents should ask to speak with their child’s homeroom teacher to see if they can come in and speak to the class for ten minutes. During the ten minutes they’ll explain age-appropriate terminology for the disease and how it affects their child and why it’s important for other children to be aware of rare diseases. Let them know you’ll be distributing denim ribbons and a fact/worksheet.
The students are sent home with a flyer to give to their parents explaining our foundation and the importance of rare disease research.
- To generate curiosity in students on the topic of rare disease, and encourage them to take an interest in new fields of science.
- To promote awareness and understanding and create compassion for other people living with rare disease.
About Global Genes
Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Our mission is to eliminate the challenges of rare disease.
1: Download and print our RARE FACTS Sheet to be distributed to students
2. Fill out our Ribbon Request Form to have ribbons sent to you for free.
3: Speak with your teacher or your child’s teacher about allowing you a timeslot to use during the class’s schedule.
4: Take pictures and share a recap of your event with Global Genes using this form.