State Regulatory Affairs Specialist, Medicaid and Health Policy - National Organization for Rare Disorders : Job Details

State Regulatory Affairs Specialist, Medicaid and Health Policy

Join to apply for the State Regulatory Affairs Specialist, Medicaid and Health Policy role at National Organization for Rare Disorders

State Regulatory Affairs Specialist, Medicaid and Health Policy

Join to apply for the State Regulatory Affairs Specialist, Medicaid and Health Policy role at National Organization for Rare Disorders

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About NORDThe National Organization for Rare Disorders (NORD) is the leading nonprofit organization serving the rare disease community in the United States. Join our team and be part of the transformation of science, policy, care and awareness raising that is improving the lives of the over 25 million Americans affected by rare diseases. We offer a competitive compensation and benefits package along with a collaborative work atmosphere, flexible telecommuting options, and opportunities for career growth and development. Learn more at www.rarediseases.org.

About NORDThe National Organization for Rare Disorders (NORD) is the leading nonprofit organization serving the rare disease community in the United States. Join our team and be part of the transformation of science, policy, care and awareness raising that is improving the lives of the over 25 million Americans affected by rare diseases. We offer a competitive compensation and benefits package along with a collaborative work atmosphere, flexible telecommuting options, and opportunities for career growth and development. Learn more at www.rarediseases.org.Position SummaryThe State Regulatory Affairs Specialist is responsible for supporting the development and implementation of NORD's state regulatory policy initiatives to improve the lives of people with rare diseases. This position will focus on engaging with state regulatory agencies on issues related to rare disease policy, with particular emphasis on state Medicaid programs and departments of health, including improving patient access to timely diagnoses, treatment, and care, as well as supporting the implementation and effectiveness of Rare Disease Advisory Councils (RDACs). The specialist will monitor state regulatory activity, draft comments and policy recommendations, coordinate with coalitions and stakeholders, and represent NORD in discussions with regulatory agency staff.Essential Duties And Responsibilities

• Monitor state regulatory activity relevant to rare diseases, including regulations and guidance related to Medicaid, health insurance, diagnostics, and treatment access across all 50 states.
• Draft formal public comments, letters, and other regulatory submissions in response to proposed rules, policies, and notices issued by state agencies.
• Track implementation of laws and regulations relevant to rare diseases and support efforts to ensure that regulations align with the needs of the rare disease community.
• Build relationships and coordinate meetings with staff at state departments of health, insurance, and Medicaid agencies, serving as a representative of NORD.
• Serve as the regulatory policy point of contact for RDACs and other state-based initiatives, offering guidance on navigating agency engagement and promoting patient-centered regulatory practices.
• Collaborate with internal teams and external partners to develop educational resources and tools for effective regulatory advocacy, including toolkits, comment templates, and policy briefs.
• Participate in or lead webinars, meetings, and coalitions to coordinate stakeholder engagement on regulatory issues.
• Maintain knowledge of national trends and state-specific developments affecting rare disease patients and integrate this into NORD's state regulatory strategy.
• Provide state-level regulatory expertise and analysis to inform NORD's broader legislative and policy strategy.
• Assist in training and supporting patient advocates and partners on engaging in state regulatory processes.
• Provide policy input and support to other NORD departments as needed.
• Perform other duties and functions as assigned.

Education/Experience

• Bachelor's degree in a related field (public policy, public health, political science, social work, healthcare administration, or related discipline) required. Master's degree preferred.
• At least 3 years of experience in public policy with a focus on state regulatory issues, especially Medicaid policy, or experience working directly with or within state regulatory agencies or state Medicaid programs.
• A demonstrated interest in and commitment to improving healthcare outcomes, particularly for underserved populations or individuals with rare diseases through professional, volunteer, or lived experience.
• Experience with stakeholder engagement and coalition-building.

Knowledge, Skills And Abilities

• Strong understanding of state regulatory processes, particularly in health and human services. Familiarity with state Medicaid waiver programs and managed care regulations a plus.
• Excellent organizational, verbal (including public speaking), and written communication skills.
• Ability to draft persuasive and well-reasoned policy documents, comments, and recommendations.
• Capable of managing multiple projects and deadlines in a fast-paced environment.
• Comfortable working independently and collaboratively as part of a team.
• Willingness to travel up to 30% of the time.
• Proficiency with Microsoft Office and Teams.

Working ConditionsThis position is fully remote with required travel for special events, conferences and meetings.Essential functions are typically performed in an office setting with a low level of noise. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.NORD is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status.

Seniority level

• Seniority levelMid-Senior level

Employment type

• Employment typeFull-time

Job function

• Job functionLegal
• IndustriesNon-profit Organizations

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