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TMCNet:  Media Alert - Rare New Jersey Rescheduled for March 13

[March 13, 2014]

Media Alert - Rare New Jersey Rescheduled for March 13

--(Business Wire)--

Rare New Jersey:




WHO:

  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).
 

WHAT:

Rare Disease Day in Trenton
 

WHEN/WHERE:

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).
NB: Previously scheduled for Monday, March 3, 2014.
 

WHY:

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.
 
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.
 

SPEAKERS:

Speakers at the Noon to 1:00 p.m. event will include:
 

--

 

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.

 

--

 

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.

 

--

Debbie Hart, President and CEO of BioNJ, the state's trade association for biotech companies and affiliated organizations.

 

--

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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