Media Alert – 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 New Jersey
 

WHEN:

Monday, March 3, 2013; Remarks before the Assembly Health and Senior Services, Committee, patients sharing stories from Noon to 1:00 P.M., followed by luncheon.
 

WHERE:

Committee Room 4, 4th floor, Annex Building, New Jersey State House, Trenton, NJ
 

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 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.
  • Nine 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.

Contacts

Congenital Hyperinsulinism International
Julie Raskin, 973-715-3360
jraskin@congenitalhi.org
or
Soft Bones
Jane Castello, 201-317-1818
jane@softbones.org
or
BioNJ
Bill O’Donnell
(O) 609-890-3185
(C) 609-802-3091
bodonnell@bionj.org

Release Summary

Rare Diseases Day to be commemorated at State House in Trenton on Monday, March 3, 2014, with patient and care giver stories.

Sharing

Contacts

Congenital Hyperinsulinism International
Julie Raskin, 973-715-3360
jraskin@congenitalhi.org
or
Soft Bones
Jane Castello, 201-317-1818
jane@softbones.org
or
BioNJ
Bill O’Donnell
(O) 609-890-3185
(C) 609-802-3091
bodonnell@bionj.org