Remote Rare Disease Jobs (NOW HIRING)

Job Description Summary

#LI-Remote
This position can be based remotely anywhere in the U.S. (there may be some restrictions based on legal entity). Please note that this role would not provide relocation as a result. The expectation of working hours and travel (domestic and/or international) will be defined by the hiring manager. This position will require 20% travel.
Job description summary
The Data Innovation, Partnerships and Products team, under the Data Products and Foundations pillar within Strategy, Platforms and Transformation, enables improved decision-making at Novar-tis by leveraging data and advanced analytics capabilities to generate actionable insights that drive business growth. The Associate Director, Data Partnerships - Rare Disease will play a critical role in establishing, managing, and strengthening rare disease-focused data partnerships that support the US Commercial organization and advance priority business needs across rare dis-ease brands, customer engagement, patient access, patient finding, and field execution.
This role is responsible for overseeing Novartis' strategic rare disease data partnerships within SPT to ensure compliance, quality, business relevance, and effective use of external data assets. The Associate Director will bring depth in healthcare and rare disease data, including experience working with or for a data vendor, and will help implement the data partnership strategy, monitor spend and partnership performance, enforce data stewardship practices, and partner with internal teams to identify the most relevant rare disease data sets to support business needs and data-driven decision-making.

Job Description

Key Responsibilities:

• Implement the organization's rare disease data partnership strategy, including the identification of critical data needs across US Commercial rare disease brands, functions, and priority use cases.
• Establish, manage, and strengthen strategic rare disease data partnerships with external data providers, platforms, and vendors to maximize the value of external rare disease data assets.
• Apply deep understanding of rare disease data sources, vendor capabilities, data limitations, patient identification challenges, and fit-for-purpose use cases to guide partnership decisions and business recommendations.
• Monitor adherence to data quality, security, privacy, and compliance standards for external rare disease data sources, platforms, and vendors, ensuring alignment with regulatory requirements and internal data management policies.
• Collaborate with data vendors, business stakeholders, analytics teams, field enablement, access, patient services, and cross-functional rare disease teams to address data quality issues and communicate corresponding changes.
• Implement oversight mechanisms for external rare disease data partnerships, ensuring compliance with data standards, data-sharing agreements, governance expectations, and internal policies.
• Implement data stewardship practices across platforms, vendors, and technology solutions to verify that rare disease data is properly managed, governed, and leveraged throughout the partnership lifecycle.
• Track rare disease data partnerships and spend, provide performance metrics and governance reporting to senior leadership, and identify opportunities for operational efficiencies, improved governance, and enhanced collaboration.
• Work closely with internal stakeholders to understand rare disease business needs, recommend relevant data sets, and guide teams on how to extract actionable insights from available data sources.
• Provide ongoing data advisory support to internal stakeholders, including guidance on recurring deliverables, interpretation of data outputs, data availability, limitations, and appropriate use of rare disease data to support business decisions.

Experience:

Novartis seeks an individual with extensive experience establishing and managing rare disease data partnerships. The ideal candidate will have a deep understanding of healthcare and rare disease data, including the strengths, limitations, governance considerations, and business applications of external data assets. Prior experience working with or for a data vendor is strongly preferred, as this role requires the ability to assess vendor capabilities, challenge data assumptions, manage partnership performance, and translate rare disease business needs into practical data solutions. A proven ability to navigate data-related risks, including privacy, security, quality, compliance, and small patient population considerations, while building mutually beneficial vendor partnerships is essential. The successful candidate will be committed to continuous improvement in the organization's rare disease data partnership strategy, leveraging data insights, vendor expertise, and industry trends to strengthen collaboration and maximize the value of external data assets.

Essential Requirements:

• Education: Bachelor's or Master's degree in Information Management, Computer Science, Business Administration, or related field.
• Minimum 6 years of experience establishing and managing data partnerships, with a strong focus on rare disease, healthcare data, data governance, data management, or related roles.
• Prior experience working with or for a data vendor, data provider, healthcare data platform, or analytics organization is strongly preferred.
• Deep understanding of rare disease data assets, including data sourcing, patient identification, data coverage, refresh cadence, linkage, quality considerations, and fit-for-purpose business use cases.
• Expert understanding of data partnership principles, frameworks, and best practices, with a proven ability to forge strategic collaborations with external data providers and vendors.
• Familiarity with regulatory requirements and industry standards related to healthcare data privacy, security, quality, compliance, and appropriate use of rare disease data.
• Excellent leadership, communication, stakeholder management, influencing, and change management skills in a complex organizational environment.
• Strong analytical and problem-solving skills, with the ability to assess vendor data quality, identify data gaps, manage risks associated with external data partnerships, and ensure the integrity, security, and quality of shared data.
• Experience working with IQVIA, Komodo, MMIT, Symphony, Definitive Healthcare, Veeva, claims/EHR data providers, patient services data, specialty pharmacy data, or similar healthcare and rare disease data sources is highly desirable.
• Ability to translate rare disease business needs into data solutions and guide teams in selecting and leveraging the right data sets to support decision-making.

Novartis Compensation Summary:

The salary for this position is expected to range between $145,600.00 and $270,400.00 per year.

The final salary offered is determined based on factors like, but not limited to, relevant skills and experience, and upon joining Novartis will be reviewed periodically. Novartis may change the published salary range based on company and market factors.

Your compensation will include a performance-based cash incentive and, depending on the level of the role, eligibility to be considered for annual equity awards.

US-based eligible employees will receive a comprehensive benefits package that includes health, life and disability benefits, a 401(k) with company contribution and match, and a variety of other benefits. In addition, employees are eligible for a generous time off package including vacation, personal days, holidays and other leaves.

EEO Statement:

The Novartis Group of Companies are Equal Opportunity Employers. We do not discriminate in recruitment, hiring, training, promotion or other employment practices for reasons of race, color, religion, sex, national origin, age, sexual orientation, gender identity or expression, marital or veteran status, disability, or any other legally protected status.

Accessibility and reasonable accommodations

The Novartis Group of Companies are committed to working with and providing reasonable accommodation to individuals with disabilities. If, because of a medical condition or disability, you need a reasonable accommodation for any part of the application process, or to perform the essential functions of a position, please send an e-mail to us.reasonableaccommodations@novartis.com or call +1(877)395-2339 and let us know the nature of your request and your contact information. Please include the job requisition number in your message.

Salary Range

$145,600.00 - $270,400.00

Skills Desired

Cross-Functional Collaboration, Customer Engagement, Customer Insights, Data Analytics, Digital Marketing, Market Research, Media Campaigns, Product Marketing, Stakeholder Engagement, Stakeholder Management, Team Leadership, Waterfall Model