Wear That You Care - February 2012 supporting rare disease families!

Rare Disease Day at NIH (RDD@NIH)

On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; the National Organization for Rare Disorders; and the Genetic Alliance.

Rare Disease Day at NIH (RDD@NIH) will be held in the Clinical Center’s Masur Auditorium (Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.

In addition to the various scheduled talks, we expect to have posters and exhibits from many groups relevant to the rare diseases research community. In association with the Global Genes Project, we again encourage all attendees to wear their favorite pair of jeans.  While attendance is free, we would like to know how many people are planning to attend to prepare accordingly. If you would like to display a poster or exhibit, please include that information on your registration form.  You can contact Dr. David J. Eckstein at eckstein@od.nih.gov for more information. The NIH Office of Rare Diseases Research encourages all attendees to also plan on attending the Food and Drug Administration’s Rare Disease Day activities on March 1, 2012.

7,000 Bracelets for Hope Continues throughout 2012

The 7,000 Bracelets of Hope campaign has already inspired hundreds of bracelet designers from all around the globe to join in helping champion the rare disease community by supporting this important cause!

Bracelet donations are being accepted and families are still encouraged to register to receive one of the beautiful and unique bracelets that have been designed to inspire hope and show support to families affected by rare disease.  It is easy to participate, join us at www.globalgenesproject.org/7kbracelets.php to register!

Designer Champion – Lori Anderson!

There has been a recent outpouring of activity in large part due to an amazing advocate – Lori Anderson.  Lori has designed a ‘blog hop’ for her community of blog followers ‘Pretty Things’ and had a huge amount of support in a very short time from women all around the world offering to participate in the 7K campaign.  It is amazing to see how this simple idea sparked so much support.  http://lorianderson.blogspot.com/2011/04/bracelet-blog-hop-7000-bracelets-of.html  Please check out Lori Anderson’s website/blog, and if you get a chance, thank her!  Also, Lori has a very special story as well, she represents pseudotumor cerebri.  Also a rare disease.  We are so very grateful Lori, we support you and thank you!!!

We are getting in daily shipments of bracelets, and we are working hard to log them, thank the designers and get them ready to be shipped to a rare disease family.  If you know someone who deserves a little pick me up, or need one yourself, please register to receive one of these bracelets of hope on the global genes site.

We Need Ideas

We are so grateful with the continued support, we hope it doesn’t end.  We are also working to come up with ideas on how to promote some of the designs to make them available to people who might like to also purchase them.   We would be interested to hear feedback from the community about ideas for 7K Bracelets.  For example, perhaps a favorite designer could make a special design that could be purchased at wholesale from a foundation, and made available as part of a fundraising event.  The bracelet designs could also be used as gifts for non-profits for their big donors.  There are lots of ideas floating around – we would love to hear from you!

“We are partnering with the Children’s Rare Disease Network to support the Global Genes Project, which is a grassroots effort to raise awareness for children suffering from rare diseases,” said Mark Gale, president at C|O. “We are wearing jeans as part of the ‘wear that you care’ concept, and as a reminder to vote every day at vote4hope.org.”

There are currently more than seven thousand rare diseases identified, affecting 30 million people in the U.S. alone, 75 percent of whom are children. The Global Genes Project raises awareness of genetic diseases and generates funds to promote collaborative research into disease causes and treatments.

The Pepsi Refresh Program is dedicated to creating change with programs from people, businesses, and nonprofits to make a positive impact in the world. Users log into the Pepsi Refresh website to vote for ideas, and the top two ideas with the most accumulated votes are funded.

“Our staff is voting for the Global Genes Project each day by going to vote4hope.org,” said Gale. The Vote4Hope website allows visitors to vote three different ways—vote on the Pepsi Refresh website, vote on Facebook and text to vote.

“We can’t help this grassroots effort alone; we need other people to vote and show their support for children with rare diseases.”

DANA POINT, CA – February 1, 2010 – Hope – It’s In Our Genes.™ The Children’s Rare Disease Network today announced the Global Genes Project, an initiative designed to raise awareness about the prevalence of rare diseases that afflict millions of children worldwide. Rare disease advocates organizing the campaign selected a blue jeans denim ribbon as the international symbol of hope for children suffering from life threatening and chronically debilitating rare diseases.

More than 90 corporations, non-profit foundations, research institutions and children’s hospitals have signed on to support the Global Genes Project including: 23andme, Amicus Therapeutics, Better Health, BioMarin, CheckOrphan, CollabRx, Counsyl, Coriell Institute, DonateGames.org, FasterCures, FreeForm, Genetic Alliance, Geni.com, Genzyme, Hide and Seek Foundation, Jackson Laboratory, Kakkis EveryLife Foundation, Knome, Lili Claire Foundation, Life Technologies, Mayo Clinic and Shire.

Numerous rare disease foundations from countries including Australia, Argentina, Belgium, Canada, China, New Zealand, Philippines, the United Kingdom and United States are helping support the global movement by organizing activities throughout February and leading up to World Rare Disease Day 2010.

“The Global Genes Project is providing a new platform to help unite people under a common goal and to make a difference for all children suffering from rare disease,” said Nicole Boice, Founder, Global Genes Project. “We want to create a world where children suffering from chronic disease have equal access to life saving drug treatments.”

Growing Public Health Concern; Inequity Exists

Rare disease is an important and growing global public health concern that can no longer be ignored. While each disease may be rare when considered by itself, rare disease collectively impacts the lives of millions. According to estimates from the National Institutes of Health (NIH), approximately 6,800 rare diseases exist, many of which are genetic in origin, translating to an affected population of 25-30 million Americans or approximately 1 in 10 people. In Europe, the number affected is almost identical. Approximately 75% of those affected by rare diseases are children, making the rare disease category one of the most deadly and debilitating for children worldwide.

Despite the success of the Orphan Drug Act of 1983, pharmacologic treatments exist for only a small fraction of rare diseases, or approximately 200 of the 6,800 rare diseases. After 25 years of orphan drug regulations and legislation, the development path to approve new drugs has not stimulated orphan drug development for small populations of patients facing rare disease.
Current studies also suggest that it takes more than a dozen years and hundreds of millions of dollars to take a potential drug from discovery to the marketplace. As a result, severe inequity exists in access to care and treatment for millions of rare disease patients.

Denim Blue Jeans Ribbon Campaign

Leading up to the annual World Rare Disease Day on February 28, 2010, the Global Genes Project will help facilitate a series of denim focused awareness events, charitable activities and engage corporate sponsors, government officials, celebrities and the media to help spread its lifesaving message of hope.

“Blue is the color of strength and our blue jeans denim ribbon is an ideal symbol that expresses solidarity,” added Boice. “Genes and jeans are a natural fit – both are universal, come in pairs and are unique to the individual. It’s a simple concept that anyone can embrace and a powerful way to raise awareness for rare disease.”

The Global Genes Project is asking rare disease advocates and supporters across the world to wear denim jeans and blue jeans denim ribbons the week of February 22 and leading up to World Rare Disease Day 2010. The organization is also asking supporters to display the blue jeans denim ribbon symbol on their websites and to actively invite co-workers, friends and family and their community to join in spreading this global message.

Blue jeans denim ribbons can be obtained by visiting www.globalgenesproject.org. Denim jeans and ribbon wearing supporters can submit digital photos on Facebook. To join the growing list of supporters, visit http://www.globalgenesproject.org/sponsors.php.

About The Global Genes Project

The Global Genes Project is a campaign of the Children’s Rare Disease Network and a grassroots effort with the goal to increase awareness about the prevalence of rare diseases worldwide. The Children’s Rare Disease Network is a registered 501c3 non profit organization. For more information, visit www.crdnetwork.org or www.globalgenesproject.org.

With a community of 100 million strong in the US and equal those numbers in the EU this community is deserving of the same energy, efforts, attention and support as some of the big individual diseases like AIDS and Breast Cancer.

We live in a time when we have seen huge success from organizations engaging and building a constituencies for their disease and from outside the community – and for the first time, the rare disease community is coming together to create a broad unifying campaign that will educate, inform and transform this community as we know it.  This will be the year for the rare disease community – our coming out, of sorts.  There is a lot planned that will benefit this community in Q1 – Crowley movie, ‘Extraordinary Measures’, 3-Part PBS Series on technology innovations and the impact on rare disease, and the 2nd Annual World Rare Disease Day -  however, Global Genes Project will become a catalyst for this community and provide a platform for ongoing outreach and engagement, garnering the much needed support that these kids deserve.

Check out www.globalgenesproject.org and join the effort on Facebook as well. There will be numerous opportunities and ideas on how individuals, rare disease organizations and corporations can get involved. It can be as easy as wearing denim genes and incorporating the adorable/identifiable jeans ribbon on your site/blog, etc.

Stay tuned for more updates!!!