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Media Alert - Rare New Jersey Rescheduled for March 13
--(Business Wire)--
Rare New Jersey:
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WHO:
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Rare New Jersey, a working group of patients, patient advocates, and
life sciences professionals working together to improve the lives of
rare disease patients in New Jersey. Rare New Jersey members include
19 rare disease patient advocacy organizations including
co-sponsors, BioNJ, and the National Organization for Rare Disorders
(NORD).
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WHAT:
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Rare Disease Day in Trenton
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WHEN/WHERE:
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Thursday, March 13, 2013: Remarks before the Assembly Health and
Senior Services Committee (Committee Room 11, 4th Floor, State House
Annex, Trenton NJ) patients sharing stories from Noon to 1:00
P.M.(Committee Room 4), followed by luncheon (Lafayette Yard, Hotel,
Trenton, NJ).
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NB: Previously scheduled for Monday, March 3, 2014.
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WHY:
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In the U.S., any disease affecting fewer than 200,000 people is
considered rare. There are nearly 7,000 rare diseases affecting
nearly 30 million Americans. In other words, almost one in ten
Americans suffer from a rare disease.
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Besides dealing with their specific medical problems, people with
rare diseases struggle to get a proper diagnosis, find information
and get treatment. The rarity of their conditions makes medical
research more difficult.
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SPEAKERS:
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Speakers at the Noon to 1:00 p.m. event will include:
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New Jersey State Assemblyman Herb Conaway (D-7), Chair of
the Health and Senior Services Committee of the New Jersey
Legislative Assembly and Assemblyman of the 7th
district of New Jersey. Dr. Conaway has been a leading health care
advocate in New Jersey focusing on increasing access to excellent
care while keeping costs down, and tackling some of the most
common health issues citizens of New Jersey face like diabetes.
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--
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Eight Patient and Caregiver Speakers. From diagnosis to the
search for treatments and specialists, from newborn screening to
affordability of care, rare disease patients face myriad obstacles
in their quest for good health care and access to school, work,
and housing. The brief stories presented will exemplify the
community's challenges and triumphs in different phases of the
life cycle.
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Debbie Hart, President and CEO of BioNJ, the state's trade
association for biotech companies and affiliated organizations.
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--
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NORD Representative: the leading umbrella organization
providing advocacy, education, research and patient/family
services for the rare disease community for 30 years.
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