Please join Rare New Jersey for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention to rare diseases as an important public health issue that cannot be ignored. Patients and advocates who support them will be speaking about the issues across the life cycle. 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.
Learn about all this and more from patients, legislators, experts, and patient advocates. With the enactment of the Affordable Care Act, and the new heightened role states play in the lives of patients, this topic and discussion are extremely timely and important.
When: March 3, 2014
Time: 12:00 – 1:00 pm
Where: Committee Room 4 – Annex Building
New Jersey State House, 125 West State Street, Trenton, New Jersey
Please join us for lunch immediately following our event at the Lafayette Yard Hotel. You’ll meet other members of the rare disease community and the people who support them. Space is limited, so please RSVP to Shari Ungerleider at firstname.lastname@example.org by February 24, 2014 and let her know how many are in your party.
This event is sponsored by NORD, the National Organization for Rare Disorders, and organized by Rare New Jersey, a working group of patients, patient advocates, and industry working together to improve