New Jersey State Ambassador
What's Happening Now?
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for New Jersey’s Rare Action Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in New Jersey.
Rare Disease Day 2019 Recap!
On March 11, 2019 New Jersey Rare Action Network hosted a free Rare Disease Day advocacy event at the New Jersey Health Museum and State Capitol. Patients, families, caregivers, medical professionals, industry representatives attended. The event was followed with legislative visits at the state capitol. Individuals learned about real world advocacy from New Jersey legislators and about the rare disease patient journey from those who live it. First Lady Tammy Murphy, who takes a special interest in infant and maternal mortality, provided the keynote address.
Check out our NJ RAN Ambassador, Julie Raskin’s, blog about the day: https://congenitalhi.org/rare-disease-day-in-the-garden-state/
In order to make meaningful change in the lives of rare disease patients and their families in the state of New Jersey, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.
State Report Card
In this fourth edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.
Scoring for State Policies
A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.
B: State policy meets most, but not all desired standards
C: State policy on the given issue meets minimum standards
D: State has some policy in place, but it does not meet the standards of higher tiers
F: State has no policy provision for the relevant issue
Marlene Caride, Commissioner
State of New Jersey
Department of Banking and Insurance
20 West State Street PO Box 471
Trenton, New Jersey 08625-0325