Rare Disease Advocates Unite To Translate Slogan of Global Genes Project in time for World Rare Disease Day!


Hope – It’s In Our Genes™ Slogan Available In Multiple Languages and Braille

DANA POINT, CA – February 25, 2010 – The Global Genes Project (www.globalgenesproject.org), today announced that its rare disease campaign slogan, “Hope – It’s In Our Genes™,” has been translated into multiple international languages and Braille by rare disease patient advocates and supporters from around the world.  The translation of this slogan unifies the rare disease community and global network under one banner.

“Rare disease knows no borders,” said Nicole Boice, founder of the Global Genes Project and Children’s Rare Disease Network. “This initiative has brought new energy into the rare disease community and has inspired people from all over the world get involved to make rare disease a global public health priority.”

Since launching the Global Genes Project last month, supporters have helped translate the slogan into a variety of languages including Afrikaans, Dutch, French, Hindi, Hebrew, Italian, Korean, Portuguese, Russian, Spanish, Uighur, Vietnamese and Xhosa. The slogan has also been translated into Braille, a method widely used by blind people to read and write.  Additional translations of the Hope slogan will be added over time to the Global Genes Project website.

With its ‘blue denim ribbon’ as its unifying symbol of hope to find treatments and cures for rare diseases, more than 150 patient organizations, research organizations, government agencies and companies have pledged their support to the Global Genes Project.

New supporters joining the effort include: 454 Sequencing, Affymetrix, AT Children’s Project, Autism Speaks, Canadian Organization For Rare Disorders (CORD), CureSearch, China-Dolls, Glue Dots International, Local.com, Lucile Packard Children’s Hospital at Stanford, MitoAction, Muscular Dystrophy Association, National Fragile X Foundation, National MPS Society, Pathway Genomics, Personal Genome Project, Progeria Research Foundation, RareShare, Reco Jeans and more.

In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to statistics from the National Institute of Health (NIH), there are thought to be nearly 7,000 life-threatening and heavily debilitating conditions affecting nearly 30 million Americans (1 in 10 people or 10% of the population). Despite the infrequency of each rare disease, the total number of rare disease patients in the United States is equivalent to the total populations of New York and New Jersey combined.

In the European Union’s 27 member states, it is estimated that rare disease patients make up between 6% and 8% of the total EU population, or between 27 and 36 million people. This is equivalent to the total combined populations of the Netherlands, Belgium and Luxembourg.

Beyond the US and EU, few reliable rare disease statistics exist for other countries.  Some alarming statistics that are currently available include:

  • More than half of the 30 million patients in the United States affected with rare disease are children
  • Approximately 15 million Americans have rare diseases for which there still is no approved treatments and no research in progress
  • Approximately 80% of rare diseases are attributed to genetic defects, many which are untreatable and life-threatening
  • In the 25 years since the Orphan Drug Act of 1983 was signed into federal law, the FDA has only approved approximately 350 treatments for all rare diseases combined

The Global Genes Project has been organized to accomplish the following goals:

  • Create greater awareness about the prevalence of rare disease globally and encourage international efforts to eradicate these disorders
  • Educate those within and outside the rare disease community about genetic factors leading to rare disease
  • Provide a unified platform for fundraising for individual rare disease organizations

“World Rare Disease Day is a crucial time for bringing attention to the needs of millions of people with rare diseases,” added Boice. “However, building rare disease awareness should not be confined to a single day. We are encouraging our supporters to organize a ‘Wear Jeans Day’ or fundraising event any day of the year.”

To join the thousands of people who are uniting to raise awareness for rare disease, visit www.globalgenesproject.org. To share your story and connect with people who have a passion for rare disease awareness, visit the Global Genes Project on Facebook. To translate the Global Genes Project slogan into a new language, please visit www.globalgenesproject.org/downloads.php.

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