FOR IMMEDIATE RELEASE
May 21, 2008
Contact: Donna Appell, President and Founder of the HPS Network, 1 (800) 789-9477
HPS Network applauds signage of the Genetic Information Non-discrimination Act
Oyster Bay, NY – The HPS Network commends the passage and signing of the Genetic Information Non-Discrimination Act (GINA). GINA will allow patients with HPS, as well as millions of others with genetic disorders, to seek out diagnostic testing without fear of retribution from employers or insurance companies.
Often patients are reluctant to be tested for a predisposition for genetic disorders like HPS because they fear increased insurance premiums or being unable to get insurance at all.
For patients with HPS, not being correctly diagnosed can be dangerous. HPS is a rare form of albinism that causes legal blindness, a bleeding disorder and in some mutations digestive problems as well as pulmonary fibrosis. The bleeding disorder of HPS can easily be managed if patients and their physicians are aware of the syndrome. However, life threatening complications could develop in the event of a trauma, surgery or childbirth if appropriate precautions are not taken.
“We hope that more families will seek testing without fear thanks to the passage of GINA,” said Donna Appell, President and Founder of the HPS Network, “Patients that go undiagnosed cost the healthcare system more because of extra care needed to treat issues not caught early.”
The HPS Network has lobbied for GINA for several years.
The passage of GINA will also make it possible for more patients to participate in clinical research that will one day lead to better treatments and cures without fear.
To speak to the HPS Network about the signing of GINA, or to speak with an HPS patient, call 1 (800) 789-9477.
For more information about HPS go to www.hpsnetwork.org.
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May 21, 2008
Contact: Donna Appell, President and Founder of the HPS Network, 1 (800) 789-9477
HPS Network applauds signage of the Genetic Information Non-discrimination Act
Oyster Bay, NY – The HPS Network commends the passage and signing of the Genetic Information Non-Discrimination Act (GINA). GINA will allow patients with HPS, as well as millions of others with genetic disorders, to seek out diagnostic testing without fear of retribution from employers or insurance companies.
Often patients are reluctant to be tested for a predisposition for genetic disorders like HPS because they fear increased insurance premiums or being unable to get insurance at all.
For patients with HPS, not being correctly diagnosed can be dangerous. HPS is a rare form of albinism that causes legal blindness, a bleeding disorder and in some mutations digestive problems as well as pulmonary fibrosis. The bleeding disorder of HPS can easily be managed if patients and their physicians are aware of the syndrome. However, life threatening complications could develop in the event of a trauma, surgery or childbirth if appropriate precautions are not taken.
“We hope that more families will seek testing without fear thanks to the passage of GINA,” said Donna Appell, President and Founder of the HPS Network, “Patients that go undiagnosed cost the healthcare system more because of extra care needed to treat issues not caught early.”
The HPS Network has lobbied for GINA for several years.
The passage of GINA will also make it possible for more patients to participate in clinical research that will one day lead to better treatments and cures without fear.
To speak to the HPS Network about the signing of GINA, or to speak with an HPS patient, call 1 (800) 789-9477.
For more information about HPS go to www.hpsnetwork.org.
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