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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 20,000 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 30 members:
State Government Representatives (Ex Officio):
- Commissioners of:
- Health
- Human Services
- Children and Families
- Banking and Insurance
- Environmental Protection
- Executive Director of the New Jersey Office on Minority and Multicultural Health
Legislative Members:
- Two members from the New Jersey Senate (one appointed by the Senate President, one by the Minority Leader)
- Two members from the General Assembly (one appointed by the Speaker, one by the Minority Leader)
Public Members (Appointed by the Governor):
- Physicians with expertise in rare diseases (including at least one pediatrician)
- Registered nurse with experience in rare disease care
- Geneticist and genetic counselor
- Pharmacist with rare disease experience
- Representatives from:
- New Jersey Hospital Association
- New Jersey Primary Care Association
- Health insurance industry
- Pharmaceutical industry
- Biotechnology industry
- Medical technology industry
- Rutgers Biomedical and Health Sciences
- Rowan University Graduate School of Biomedical Sciences
- Rare disease patient advocacy organizations
- Two adult individuals living with a rare disease
- Two caregivers, including one caregiver for a child with a rare disease
These members bring critical insight from clinical, academic, industry, and patient-care perspectives to ensure state policy is informed, inclusive, and forward-thinking.