House Representatives Introduce Bill to Fight Genetic Disease

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Cure HHT is proud to announce that Representatives Jim Himes (D-CT) and Ed Royce (R-CA) introduced the HHT Diagnoses and Treatment Act HR 1849 in congress on April 16, 2015 in an effort to improve diagnosis rates and treatment for patients with the genetic disease.

Representatives Jim Himes (D-CT) and Ed Royce (R-CA) introduced the HHT Diagnoses and Treatment Act HR 1849 in congress on April 16, 2015 in an effort to improve diagnosis rates and treatment for patients with the genetic disease.

The bill, similar to legislation introduced in the past, would be the first to create a federally led and financed initiative for early diagnoses and appropriate treatment of hereditary hemorrhagic telangiectasia. This would effectively prevent premature death and disability in adults and children, as well as lower health care costs through proven interventions.

The HHT DATA Act would require the Centers for Disease Control and Prevention to conduct surveillance initiatives, start an internal HHT resource center and support awareness programs.

The act would also authorize the appropriation of $5 million per year for the next five years to be used to improve early detection, screening, diagnosis and treatment of HHT.

"While a cure does not exist for this terrible disease, early diagnoses and preventative treatment can lessen the suffering of those living with HHT," said Rep. Royce. "The Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act will result in more early detection of HHT, an emphasis on preventative care, lower healthcare costs for families taking care of a patient, and lives saved."

“HHT is a serious genetic disorder that can lead to sudden internal bleeding, stroke and disability, and even death. Unfortunately, only nine in ten affected individuals are diagnosed and the only visible warning sign is often a common nosebleed,” said Rep. Himes. “I was pleased to introduce the bipartisan HHT Diagnosis and Treatment Act with Representative Royce to support much-needed federal research and surveillance efforts to improve HHT early diagnoses and interventions. Through the work of the NIH and CDC, we can help reduce suffering for HHT patients, further our nation’s strong commitment to medical research and lower health care costs.”

About Cure HHT:
Cure HHT is the ONLY 501(c)(3) non-profit organization in the world committed to bringing together international thought leaders, working collaboratively to find a cure for HHT. Cure HHT is also the sole provider of HHT education programs and resources for patients and physicians worldwide. For more information, visit http://www.curehht.org.

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Lauren Linhard
Cure HHT
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Lauren Linhard, Communications Associate
Cure HHT
410-357-9932
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