Kean Bill Protecting Patients of Rare Diseases Signed by Governor

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Nurse in white uniform helping a dying woman with cancer in hospital bed

Legislation sponsored by Senate Republican Leader Tom Kean establishing the New Jersey Rare Disease Advisory Council to ensure those suffering from unusual conditions receive suitable care was signed into law today.

The Governor signed legislation sponsored by Senate Republican Leader Tom Kean that would establish the New Jersey Rare Disease Advisory Council to ensure those suffering from unusual conditions receive suitable care. (©iStock)

The new law (S-2682) will assist residents living with any of more than 7,000 relatively unknown and difficult to diagnose rare diseases.


“These rare orphan diseases can be difficult to diagnose and harder to treat,” said Kean (R-21). “This law will provide desperately needed help for New Jersey residents living with rare illnesses.

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“Genetic mutations are responsible for causing many of these ailments that can be passed down through generations, often resulting in suppressed immune systems or respiratory problems for patients,” Kean added.

Rare diseases are often misdiagnosed, resulting in lengthy delays of appropriate treatment. The lack of medical specialists, medications and other therapies for these orphaned syndromes compound the problems.

“It has always been difficult for patients to find a satisfactory medical determination and effective remedies,” said Kean. “The creation of this advisory council will help improve communication, awareness and treatment. I appreciate the overwhelming support of my colleagues in the Legislature and am thankful the Governor endorsed this important measure.”

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The New Jersey Rare Disease Advisory Council will include 20 members for the purpose of advising the Legislature, State departments, agencies, commissions and authorities, and private agencies providing services for persons diagnosed with a rare disease.

In the United States, approximately 25 to 30 million people are affected by rare diseases.