A joint resolution sponsored by Senator Anthony Bucco (R-25) to build awareness and educate New Jerseyans on rare diseases that affect the public by designating the last day of February of each year as “Rare Disease Awareness Day” has passed the Senate.
Sen. Anthony Bucco’s resolution promotes awareness of rare diseases such as ALS and cystic fibrosis. (Pixabay)
“Families battling rare diseases often face significant challenges, including misdiagnosis, underinvestment in related research, and a lack of support networks,” said Bucco. “By spreading awareness of the many challenges affecting those with rare diseases, we can help recognize the hardships of they face and encourage the development of better treatment options and systems of support.”
The joint resolution, SRJ-23, designates the last day of February of each year as “Rare Disease Awareness Day” to raise public awareness to the millions of Americans and families affected by a disease.
The United States Department of Heath describes a rare disease as affecting fewer than 200,000 people in the United States. Treatment is often infrequent for individuals with rare diseases due to the expense of research, with only 5 percent of 7,000 rare disease having FDA-approved treatments.
“Every day someone in our community is fighting a rare disease that is complex and without treatment,” said Bucco. “No one should feel alone when battling their disease. With awareness, we can encourage investment in advanced medical research that may one day lead to drug trials and widely available cures.”
Rare Diseases include genetic diseases such as cystic fibrosis, muscular dystrophy, Huntington’s disease, and amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease), as well as rare cancers, auto-immune diseases, congenital malformations, and toxic and infectious diseases.
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