Bill Text: NJ SR46 | 2012-2013 | Regular Session | Introduced
Bill Title: Declares February 29, 2012 as "Rare Disease Awareness Day" in New Jersey.
Spectrum: Partisan Bill (Republican 1-0)
Status: (Introduced - Dead) 2012-02-16 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [SR46 Detail]
Download: New_Jersey-2012-SR46-Introduced.html
Sponsored by:
Senator ANTHONY R. BUCCO
District 25 (Morris and Somerset)
SYNOPSIS
Declares February 29, 2012 as "Rare Disease Awareness Day" in New Jersey.
CURRENT VERSION OF TEXT
As introduced.
A Senate Resolution declaring February 29, 2012 as "Rare Disease Awareness Day" in New Jersey.
Whereas, The National Institutes of Health defines the term "rare disease" to mean any disease or condition that affects fewer than 200,000 persons in the United States; and
Whereas, The National Institutes of Health also calculates that there are almost 7,000 rare diseases occurring in the United States, affecting more than 25 million Americans and their families; and
Whereas, Rare diseases include genetic diseases such as cystic fibrosis, muscular dystrophy, and Huntington's disease, as well as rare cancers, auto-immune diseases, congenital malformations, and toxic and infectious diseases; and
Whereas, Rare diseases can involve chronic illness, disability, and often premature death; and
Whereas, Besides struggling with serious medical problems, patients with rare diseases are frequently misdiagnosed or undiagnosed and must often cope with inadequate or no treatment; and
Whereas, Research related to rare diseases is often limited because such small patient populations offer fewer market incentives for developing effective drugs and medical treatments; and
Whereas, Hypophosphatasia is a condition that exemplifies the challenges faced by patients with rare diseases; and
Whereas, Hypophosphatasia is a rare inherited metabolic disorder that affects the development of bones and teeth by disrupting the body's mineralization process, which results in the weakening and softening of bones and teeth; and
Whereas, Severe hypophosphatasia affects an estimated one in 100,000 infants, with a 50 percent mortality rate during the first six months following birth, and with the most severe cases resulting in stillbirth; and
Whereas, Milder forms of hypophosphatasia can also appear in later childhood or adulthood; and
Whereas, Hypophosphatasia causes painful and potentially life-threatening symptoms such as: skeletal abnormalities, soft skull bones or abnormal skull shape, respiratory problems, high levels of calcium in the blood, poor appetite and weight gain, recurrent vomiting, kidney problems, early loss of primary (baby) teeth, loss of secondary (adult) teeth, abnormally shaped chest, shortened or bowed limbs, enlarged wrist and ankle joints, recurrent foot and thigh bone fractures, and chronic pain and inflammation; and
Whereas, As with many other rare diseases, hypophosphatasia currently has no cure or proven medical therapy, although several treatment options and approaches are currently being studied; and
Whereas, The National Organization for Rare Disorders annually sponsors Rare Disease Day in the United States, on the last day of February of each year, to spotlight rare diseases as an important public health issue, to support policies and practices that facilitate scientific discoveries and treatment innovations, to encourage dissemination of information about rare diseases, and to help reduce the isolation of rare-disease patients and their families; and
Whereas, It is appropriate that New Jersey recognize February 29, 2012 as "Rare Disease Awareness Day" to call attention to the challenges associated with diagnosing and treating rare diseases such as hypophosphatasia and to encourage support for patients and families affected by those diseases; now, therefore,
Be It Resolved by the Senate of the State of New Jersey:
1. February 29, 2012 is declared as "Rare Disease Awareness Day" in New Jersey to raise public awareness of rare diseases such as hypophosphatasia and to encourage support for patients and families affected by rare diseases.
2. The Governor is requested to issue a proclamation calling upon public officials and the citizens of this State to observe "Rare Disease Awareness Day" with appropriate activities and programs.
STATEMENT
This resolution would declare February 29, 2012 as "Rare Disease Awareness Day" in New Jersey to raise public awareness of rare diseases and to encourage support for patients and families affected by rare diseases.
The National Institutes of Health defines "rare disease" as any disease or condition that affects fewer than 200,000 persons in the United States. There are almost 7,000 rare diseases, affecting more than 25 million Americans and their families.
Rare diseases can involve chronic illness, disability, and often premature death. One such rare disease, hypophosphatasia, is an inherited disorder that affects the development of bones and teeth. Patients with this disease may experience painful and potentially life-threatening symptoms, including skeletal abnormalities, respiratory and kidney problems, loss of teeth, recurrent bone fractures, and chronic pain. Hypophosphatasia, like other rare diseases, currently has no cure or proven medical therapy.
Patients with rare diseases are frequently misdiagnosed or undiagnosed and must cope with inadequate or no treatment, due to the limited research on their disorders. Raising public awareness of these issues may help patients and their families obtain better information about their conditions and may encourage policies and practices that facilitate further scientific discoveries and treatment innovations.
