7,000 Different Rare Diseases and Disorders Comprise 65 Page RARE List™, 95% of the Medical Conditions Included on RARE List™ Have No FDA Approved Treatments

DANA POINT, CA – February 1, 2012 – The R.A.R.E. Project a leading patient advocacy organization representing the rare disease community, today issued the RARE List™, a stunning 65 page alphabetical listing of roughly 7,000 known rare diseases and disorders. The rare diseases and disorders that comprise the RARE List™ impact 30 million Americans (or 10% of the U.S. population) and an estimated 350 million people worldwide. The RARE List™ was released by the R.A.R.E. Project as part of month long public awareness campaign leading up to World Rare Disease Day on February 29, 2012.

In 1983, the U.S. Orphan Drug Act legislation was passed in an attempt to encourage pharmaceutical companies to develop drugs for rare diseases that have a small market.  However, during its first 25 years in existence, only 326 drugs were approved by the U.S. Food and Drug Administration (FDA) for all 7,000 rare disease and disorders on the RARE List™.  Today, a shocking 95 percent of the medical conditions on the RARE List™ do not have a single FDA approved drug treatment or therapy.

“Our goal of releasing the RARE List™ is to help people understand we have a major therapy development crisis facing our community – all you need to do is scroll through the RARE List™ to understand the magnitude of the problem,” said Nicole Boice, President, R.A.R.E. Project. “Tens of billions of dollars are being poured into our nation’s research system each year and the money and effort is not translating into treatments. We need to kick start the productivity within a system that is supposedly designed to find cures for tens of millions of patients but is only producing a few new drugs each year.”

Over 700 leading organizations and thousands of advocates and supporters have signed on to participate in the efforts developed by the R.A.R.E. Project and the recently launched 1 Million for RARE™ awareness campaign. The 1 Million for RARE™ campaign is part of the Global Genes Project™ and was developed by leading advocates representing various rare diseases, in an effort to make it easy for people and organizations to actively get involved to support the rare disease community and agenda.

“If you or a loved one suffers from one of the 7,000 rare diseases or disorders found on the RARE List™ and you have not joined our team, we need you now,” added Boice. “A dramatic increase in the development of new therapies will happen only when we create a unified voice similar to what advocates have done in well known diseases such as breast cancer, heart disease and HIV-AIDS. Although many in the rare disease community are fighting very different diseases, small patient populations can’t affect the legislative and funding changes the rare disease community needs. We must combine forces to be heard and recognized on a national and international level.”

To join the 1 Million for RARE™ team on Facebook, visit: https://on.fb.me/1million4rare

For more information on the R.A.R.E. Project, visit: https://globalgenes.org/.

Contact: Amy Grover, R.A.R.E Project. 949-248-RARE (7273), amyg@rareproject.org

Note: The RARE List™ was complied from a number of public sources and is subject to frequent updates. Please note that providers and payors may be using different lists. An updated version of the RARE List™ will be maintained at: https://globalgenes.org/rarelist/. To have your condition added to the RARE List™, please contact the R.A.R.E. Project.