Suggested Activities

Even though Rare Disease Day 2014 is over, many of these activities are on-going or might inspire you to start planning for 2015!

We want to encourage everyone to get involved and participate in Rare Disease Day in whatever way is right for them. All of these activities are important and will help add to the overall impact of the day. Below find suggested activities for individuals, patient organizations, industry, medical institutions or academic centers, schools, and college students. Tell us how you plan on celebrating the day here.

Suggested Activities for Individuals:

Suggested Activities for Organizations:

  • Write your representatives to tell them why rare diseases are important to you
  • Become a Rare Disease Day partner
  • Post stories about Rare Disease Day in your organization’s newsletter and on your website
  • Display the Rare Disease Day Partner logo on your website
  • Host an event in your area or take part in events near you
  • Participate in the Handprints Across America project
  • Get involved in a State House event in your state or encourage your members to plan one in theirs
  • Thank the researchers, doctors, caregivers and families that have contributed to your organization’s success
  • Encourage your members to take part in Rare Disease Day observations
  • Launch a disease-specific awareness campaign leveraging this year’s international theme and how the importance for your particular community
  • Share any additional events or campaigns that you launch so NORD can help you promote those activities
  • Join us on Facebook and Twitter

Suggested Activities for Industry:

  • Become a Rare Disease Day partner
  • Participate in the Handprints Across America project
  • Display the Rare Disease Day logo on your website
  • Host an event for your staff, patients, and/or community members
  • Participate in a State House event or other events in your area
  • Create a display in your cafeteria or other common area to raise awareness for the day
  • Send your staff a special Rare Disease Day message over email
  • Issue a press release about your participation in Rare Disease Day
  • Donate item(s) for NORD to award as prizes to patient organization partners
  • Support Rare Disease Day by becoming a sponsor
  • Purchase Rare Disease Day merchandise
  • Follow Rare Disease Day US on Facebook and Twitter

Suggested Activities for Medical Institutions or Academic Centers:

  • Host an event at your facility for your staff, students, or the community
  • Partner with others in your area to raise awareness or host an event
  • Create an awareness display in your lobby or another central location
  • Participate in the Handprints Across America project
  • Thank members of your community who support rare disease patients
  • Send a special message about the day through your list-serve or your newsletter

Suggested Activities for Schools:

  • 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 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.
  • 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.
  • 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

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