The 5th Annual World Rare Disease Day took place February 29, 2012, with a fanfare of activities worldwide!  Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years.

Once again, the Global Genes Project™ helped support and create numerous opportunities to raise awareness for this important day through its grassroots campaigns and programs.

1 MILLION FOR RARE™ CAMPAIGN

Schools, Local Businesses, Disease Groups, Global Corporations were some of the hundreds of organizations participating in the 1 Million for Rare™ campaign supporting World Rare Disease Day 2012. “The goal of this campaign is to bring awareness of the 350 million affected by rare disease.  It’s a simple way for people to come together on one day to share their voice for this community that is often left unnoticed,” said Nicole Boice, co-founder Global Genes Project. “Rare Diseases are complex, the science behind the research is complex, the symptoms and medications are hardly pronounceable, making it difficult for the world to support this community in need.”

The Global Genes Project plans on continuing to make it easy to get engaged, show support, and build new champions for the millions of children and their families affected by rare disease. Global Genes Project will accomplish this through continued programs and educational efforts.

“It is hard to generate support for something people don’t understand, we need to help them understand, in their terms, creating simple ways for people and organizations to support this community of millions,”added Boice.

The Hope – It’s In Our Genes Campaign

When one of our parent advocates re-posted a picture that she found with the slogan “Hope. It’s in My Genes!” the Global Genes team never imagined it would have the effect that it did.  More than 700 photos were posted to Facebook in less than a week!  A collage of the pictures was created and the fervent effort to spread rare disease awareness continues through the Hope Campaign.

In addition to photos, our Patient Stories of Hope and Inspiration were featured every day throughout the month of February.  Publication of submitted patient stories on our Global Genes Project Blog have been key to joining people together and furthering awareness.  With such a great response, over 200 stories are in the queue to be showcased every day throughout the year – with more coming in every day.

Kids Helping Kids with Blue Denim Awareness

Over 40,000 blue denim awareness ribbons were made by volunteers and distributed around the globe in support of World Rare Disease Day 2012 – over double the amount for last year.

In addition to making this outreach possible through financial support, these organizations also recognized World Rare Disease Day by hosting events within their respective organizations, incorporating the blue denim theme:

  • Amylin
  • Alexion Pharmaceuticals
  • Sturge Weber
  • ViroPharma
  • Thornia Secondary School Rare Disease Club
  • Rare Disease Foundations and support Groups such as 22q and Marfan Foundation
  • Sanford Children’s Health Center
  • GlaxoSmithKline
  • GlueDots™ (makes it possible for volunteers of all ages to help make ribbons!)