Who We Are

About Us

The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.

RARE is Everywhere

1 in 10 people worldwide suffer from rare and genetic conditions

Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally.  Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes.  The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.

Unity Creates Hope™
Hope_Genes_Logo_Rare_Disease_Day

Blue Denim Genes Ribbon™ and Hope Tagline

While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined.  Despite its size, the community lacks of a unified voice, as only 15% of  rare diseases have organizations or foundations providing support or driving research.

It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA  for the nearly 7000 rare diseases which have been identified. According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare and genetic diseases.

Support the Global Genes movement today by getting involved.

Leadership

The Global Genes Project’s mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases. Many of our leaders support children, family or friends with rare and genetic diseases. They understand the fight on a deep personal level and keep in mind the needs of our community at all times.

Global Genes and our leaders are committed to ensuring that our programs support our worldwide mission:

  • Raising Rare disease Awareness, Research and Education (R.A.R.E.)
  • Unifying and empowering a vibrant rare disease community to take action
  • Funding innovative programs to help organizations fast track “in-a-lifetime” rare and disease research and therapies

Learn more about our Leadership Team, Board of Directors, Scientific and Advocacy advisory boards.