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Rare Disease Advisory Council
New Jersey Rare Disease Advisory Council
The New Jersey Rare Disease Advisory Council, established by law in 2020, serves as the State’s official body to advise government and private agencies on the needs of individuals living with rare diseases. A rare disease is defined as one affecting fewer than 200,000 people—yet more than 10,000 such conditions collectively impact over 25-30 million Americans.
Housed within the Department of Health, the Council brings together 20 members, including health care professionals, researchers, industry representatives, policymakers, caregivers, and individuals affected by rare diseases. This broad representation ensures that the Council reflects the real challenges faced by patients and families across the state.
Contact Us
For more information about NJRDAC, send us an email at DOH-NJRDAC@doh.nj.gov
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NJRDAC Mission
The Council’s mission includes:
- Recommending policy to improve diagnosis, treatment, and care for rare disease patients.
- Supporting research and identifying best practices for healthcare providers.
- Evaluating public health programs, including newborn screening and Medicaid/Medicare coverage, to ensure they meet the needs of rare disease patients.
- Raising awareness among the public and medical community.
- Advising on the impact of emergencies, such as pandemics, on people with rare conditions.
By gathering data, developing recommendations, and reporting findings to the Governor and Legislature every two years, the Council plays a critical role in shaping a more informed and responsive public health system for New Jersey's rare disease community.
Legislation
The New Jersey Rare Disease Advisory Council was established by Senate Bill No. 2682 (S2682) during the 219th Legislature. This legislation outlines the Council’s structure, responsibilities, and role in advising on rare disease issues across the state.
Read the full legislation: Chapter 135 - Establishes the New Jersey Rare Disease Advisory Council (PDF)
Members and Affiliates
The New Jersey Rare Disease Advisory Council includes a diverse group of leaders, advocates, and experts committed to improving the lives of individuals with rare diseases. The Council is composed of 20 members:
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New Jersey Rare Disease Advisory Council Governor Appointments |
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Punita Gupta |
Sabahat Bokhari |
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Rita Knause |
Helio Pedro |
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Christina Botti |
Nancy Tham |
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Carolina Aldworth |
Julie Raskin |
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Taylor Kane |
Patricia Geurds |
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Jessica Lise |
Martina Flammer (Chair) |
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Jonathan Hawayek |
Nicole Wenzel |
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Angelica Barreto |
Carolyn Daniels |