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Suggested Activities

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.

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

Start a fundraiser or donate to local charities:

There are many local Utah charities that our committed to helping our rare community. Host a fundraiser or watch for opportunities to donate funds. These charities provide research opportunities, treatment options, awareness and financial help to Our Utah Rare. Visit our “Supporters of Utah Rare” page.

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Start a local fundraising event!

Wear That You Care™

Genes and Jeans – Universal

The Wear That You Care™ campaign is simple — all across the world people can participate in supporting the Global Genes movement and rare and genetic disease awareness by wearing a Genes Ribbon™ and their favorite pair of jeans — also known as vaqueros, cowboybuksers, niuzaiku, farmernadrág and dungarees in other countries.

Wear That You Care™  denim awareness events can be held at any time during the year, however, most events are organized in the month of February leading up to the annual World Rare Disease Day.

Start A Local Event

Rare and genetic disease foundations work with Global Genes to organize Wear That You Care™ events with local corporations, organizations or schools.  We provide ribbons and educational materials for these events.  When employees or students are allowed to dress down and wear denim, funds are collected and donated to selected rare disease charities.

Numerous rare disease patient advocacy groups, pharmaceutical companies, biotech firms, schools and hospitals have distributed our Genes Ribbon™ and hold Wear That You Care™ days each year.

The National Institutes of Health also supports Wear That You Care™ and is encouraging all attendees to wear their favorite pair of jeans to their day long Rare Disease Day celebration in 2014

Interested in organizing a Wear That You Care™ event in your community?

Contact us today!

Interested in supporting your local Utah Rare Disease Charities-see the “Supporters of Utah Rare” page for a list of charities and supporters.

Start a local event with your company even with out the ribbons and educational material. Allow your employees to dress down and collect funds to donate to charity-do this for one day or as many as you would like during the year. If you have further questions please contact us at [email protected]

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Utah Rare

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