List of rare diseases in us
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, , , , , and . 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
- Post stories about Rare Disease Day in your organization’s newsletter and on your website
- Encourage your members to take part in Rare Disease Day observations
- Join us on Facebook and Twitter
Suggested Activities for Industry:
- Host an event for your staff, patients, and/or community members
- 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
- Donate item(s) for NORD to award as prizes to patient organization partners
- Follow Rare Disease Day US on Facebook and Twitter
Suggested Activities for Medical Institutions or Academic Centers:
- Partner with others in your area to raise awareness or host an event
- Create an awareness display in your lobby or another central location
- Send a special message about the day through your list-serve or your newsletter
Suggested Activities for Schools:
- 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.
- 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
- 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
- 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
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