Candelora Raises Awareness for Rare Disease Day
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Deputy Republican Leader Rep. Vincent Candelora (R-86) on Wednesday, February 25, joined Mary Caruso and Alex Bode, along with supporters and advocates, to raise awareness about important policy issues affecting people with rare diseases in Connecticut.
The National Organization for Rare Disorders (NORD) hosted Rare Disease Day 2015 at the state capitol. NORD works hard to organize a day where legislators and patients can come together for a common goal.
According to rarediseases.org, nearly 30 million Americans have a rare disease and two-thirds of Americans affected by a rare disease are children.
Lawmakers in Connecticut are considering legislation to reduce the high cost for specialty and orphan medications. Senate Bill No. 25 would mandate a cap on out-of-pocket costs for specialty medications; these caps range from $100 to $200 per month. Currently, people with rare diseases are forced to pay as much as $1,000 per month in co-pays because these medications are labeled a “specialty tier”.
“Rare Disease Day 2015 was extremely informative,” said Candelora. “Connecticut's economic development in the areas of bioscience puts our state in the center of developing many breakthroughs to help treat and cure many different rare diseases."
“It's a day of awareness and solidarity to help all patients gain strength in knowing here in Connecticut and across the country, we can focus on the needs of people living with rare disorders,” said Mary Caruso, NORD State Leader.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
For more information visit: http://RareDiseaseDay.US
The National Organization for Rare Disorders (NORD) hosted Rare Disease Day 2015 at the state capitol. NORD works hard to organize a day where legislators and patients can come together for a common goal.
According to rarediseases.org, nearly 30 million Americans have a rare disease and two-thirds of Americans affected by a rare disease are children.
Lawmakers in Connecticut are considering legislation to reduce the high cost for specialty and orphan medications. Senate Bill No. 25 would mandate a cap on out-of-pocket costs for specialty medications; these caps range from $100 to $200 per month. Currently, people with rare diseases are forced to pay as much as $1,000 per month in co-pays because these medications are labeled a “specialty tier”.
“Rare Disease Day 2015 was extremely informative,” said Candelora. “Connecticut's economic development in the areas of bioscience puts our state in the center of developing many breakthroughs to help treat and cure many different rare diseases."
“It's a day of awareness and solidarity to help all patients gain strength in knowing here in Connecticut and across the country, we can focus on the needs of people living with rare disorders,” said Mary Caruso, NORD State Leader.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
For more information visit: http://RareDiseaseDay.US