It’s a Wrap – Rare Disease Day 2011.

DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 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, Global Genes Project™ helped support and create numerous opportunities to raise awareness for this important day through its grassroots campaigns and programs.

Rare_Disease_Day_Logo_2011 Wear That You Care™ Campaign took the world by storm!

Schools, Local Businesses, Disease Groups, Global Corporations were some of the hundreds of organizations participating in the Wear That You Care™ campaign supporting World Rare Disease Day 2011. “The goal of this campaign has always been to make it simple for people to participate and support rare disease families”, 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”. It’s not easy to understand, and it is overwhelmingly scary for the general public. We are committed to changing that fact. The Wear That You Care campaign is something that is easy to participate in, helps provide an easy entry into supporting 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”, Boice stated.

Global Genes Project – World Rare Disease Day report card

7,000 Bracelets for Hope™

  • Hundreds of Bracelets donated and Hundreds of Bracelets distributed to rare disease families, in recognition of World Rare Disease Day.
  • Bracelet Donations received from global designers from the Philippines, Austrailia, UK, Europe, United States.
  • Bracelets distributed worldwide to countries like Mexico, Canada, Ireland, France, Australia, Hong Kong & Bangladesh.
  • Efforts Continue: This very inspiring campaign will continue throughout 2011. The goal is to receive 7,000 bracelet donations and deliver them to 7,000 deserving families throughout the year. For more information on how you can help, join us at 7000 Bracelets

‘Blue Denim Awareness Ribbon’ Making and Distribution

  • Over 20,000 blue denim awareness ribbons were made by volunteers and distributed around the globe in support of World Rare Disease Day.
  • 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; Pfizer, Shire, Illumina, Novartis, BioMarin.
  • Kids Helping Kids Activities on campuses nationwide
  • GlueDots™, making it possible for volunteers of all ages to help make ribbons
  • Ribbon making activities will continue year round and are being offered to all rare disease advocates and groups for events, activities, etc.

NIH World Rare Disease Day Event

Global Genes supporters Global Genes Project recognition The Global Genes Project was very visible at the NIH for their first annual World Rare Disease Day Event. At the start of the day, Nicole Boice, co-founder Global Genes Project had the opportunity to present Dr. John Gallin (pictured top right), the head of the NIH Clinical Center with a denim ribbon and say a few important words about the Global Genes Project. Additionally, on the heels of a very compelling talk by Dr. Francis Collins (pictured bottom right), Director of the NIH, Nicole Boice and Audrey Gordon, executive director of Progeria Research Foundation, presented him with a 3ft denim ribbon and a ‘treatable’ tshirt. He reciprocated by having his first slide of his presentation being the Global Genes Project logo and Francis Collins in jeans! At the event, all attendees were given denim ribbons and many wore jeans in support of this campaign and the community as a whole!

Rare Disease Caucus – Extraordinary Measures Reception and Screening

NIH EventJohn Crowley and the Rare Disease Legislative Advocates Group hosted a rare disease day (evening) event following the efforts at NIH. John Crowley, CEO Amicus and Pompe Disease parent advocate spoke to the group, which included Dick Gephardt (pictured right with Nicole Boice), House Majority Leader, who has been very supportive of the rare disease community and will continue to do so. Well attended, with support from PhRMA.

46NYC

Global Genes Project and 46NYC launched their ‘Treatable’ tshirt to benefit children and their families affected by rare disease. The campaign is on – all our children deserve treatments! – this is a powerful message and one that we can easily all participate in. We have lot’s of ideas about who needs to ‘be seen’ in a Treatable Tshirt! Send us pictures of you wearing yours and let’s post them on facebook!!! Stay tuned for more efforts related to the Treatable campaign.

Additional activities:

  • 23andMe – providing new educational materials as resources for Global Genes Project partners and members, recognition of World Rare Disease Day through promotional efforts. www.23andme.com
  • Healthline – Provided Awareness efforts and promotion the week leading up to World Rare Disease Day, providing information and support of the Global Genes Project efforts and insights into the rare disease community. www.healthline.com
  • Keck Graduate Institute – Helped support World Rare Disease Day and distributed denim ribbons to all graduate students participating in an all day event. www.kgi.edu
  • Lundbeck – Raise Your Hand event in Chicago at the NBC Studios. Kerry Hughes and Lori Butler represented both Battens Disease as well as The Global Genes Project where they distributed ribbons.

Thank you:

A Special Thanks to the current Global Genes Project Team:

  • Chris Hempel – Addi and Cassie Fund
  • Elizabeth Joshi – Joubert Syndrome Foundation
  • Heather Earley – Russell-Silver Syndrome
  • Sarah Goshman – Jacobs Cure
  • Julia Jenkins – Kakkis Everylife Foundation, Rare Disease Legislative Advocates
  • Lori Butler
  • Kerry Hughes
  • Eileen Braun – Angelman Syndrome Foundation
  • Jennifer Thornton – AT Children’s Project
  • Dean Suhr – MLD Foundation
  • Amy Grover – RARE Project
  • Wendy Liu
  • The Team at Charleston Orwig
  • SparkPR

Thank you to our supporters:

Global Genes supporters

Don’t forget to join the discussion onFacebook, Twitter, and within the ‘Global Genes’ blog channel.

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