News


January 2010

IRSF Awarded $180,000 in CDC Grant

IRSF is pleased to announce that we have been awarded a $180,000 Center for Disease Control grant to support education and awareness for patients, health professionals, and the public regarding Rett syndrome (RTT), as well as outreach, registry formation and database build-out to help organize and accurately inform families that are dealing with this debilitating disorder. This grant is the direct result of the advocacy efforts of many families across the nation that have taken time to appeal to Congress for increased federal support of IRSF’s Rett syndrome efforts. We thank you for your participation and encourage you to continue to appeal to your Congressmen this fall.


July 2009

IRSF Awarded $381,000 in CDC Grant

IRSF is pleased to announce that we have been awarded $381,000 from the Center for Disease Control to support education and awareness for patients, health professionals, and the public regarding Rett syndrome (RTT), as well as outreach, registry formation and database build-out to help organize and accurately inform families that are dealing with this debilitating disorder. This grant is the direct result of the advocacy efforts of many families across the nation that have taken time to appeal to Congress for increased federal support of IRSF’s Rett syndrome efforts. We thank you for your participation and encourage you to continue to appeal to your Congressmen this fall. IRSF is particularly grateful for the leadership and support of Congressman Steny Hoyer (D-MD) and Senator Edward Kennedy. (D-MA).


May 2008- Genetic Info Act Becomes Law

President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law

Washington, D.C. – May 21, 2008 – The Coalition for Genetic Fairness (http://www.geneticfairness.org/ ) commends President George W. Bush for signing into law today the first civil rights legislation of the new millennium, the Genetic Information Nondiscrimination Act (GINA). GINA is the first and only federal legislation that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings.
President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law (85.61 kB)

June 2008

IRSF Awarded $143,000 CDC Grant

IRSF is pleased to announce that we have been awarded a $143,000 from the Center for Disease Control grant to support education and awareness for patients, health professionals, and the public regarding Rett syndrome (RTT), as well as outreach, registry formation and database build-out to help organize and accurately inform families that are dealing with this debilitating disorder. This grant is the direct result of the advocacy efforts of many families across the nation that have taken time to appeal to Congress for increased federal support of IRSF’s Rett syndrome efforts. We thank you for your participation and encourage you to continue to appeal to your Congressmen this fall.