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Rare Disease Director Jobs (NOW HIRING)

McKesson

Director, Rare Disease Operations

The Director, Rare Disease Operations, will be responsible for overseeing the daily operations of our Rare Disease program, managing a team of customer service representatives, patient access ...

RXinsider LTD.

Director, Rare Disease Operations

Cary, NC · On-site

$150 - $210/hr

The Director, Rare Disease Operations, will be responsible for overseeing the daily operations of our Rare Disease program, managing a team of customer service representatives, patient access ...

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$57K

$186.4K

$331K

How much do rare disease director jobs pay per year?

As of Aug 22, 2026, the average yearly pay for rare disease director in the United States is $186,382.00, according to ZipRecruiter salary data. Most workers in this role earn between $115,500.00 and $249,500.00 per year, depending on experience, location, and employer.

What does a Rare Disease Director do?

A Rare Disease Director oversees the development and implementation of strategies for researching, developing, and promoting treatments for rare diseases within a pharmaceutical or biotechnology company. They coordinate cross-functional teams, manage relationships with key stakeholders such as patient advocacy groups, and ensure compliance with regulatory requirements. Their role is critical in advancing therapies for conditions that affect small patient populations and often have unmet medical needs. The position requires strong leadership, scientific expertise, and the ability to navigate complex regulatory and commercial environments.

What are some common challenges faced by a Rare Disease Director when coordinating cross-functional teams?

A Rare Disease Director often navigates complex collaborations between clinical, regulatory, medical affairs, and commercial teams. One of the main challenges is aligning diverse stakeholders to ensure timely and effective development strategies, especially given the unique regulatory pathways and limited patient populations in rare diseases. Clear communication, strong project management skills, and a deep understanding of both scientific and business priorities are essential to overcoming these challenges and driving successful outcomes.

What are the key skills and qualifications needed to thrive as a Rare Disease Director, and why are they important?

To thrive as a Rare Disease Director, you need in-depth knowledge of rare disease landscapes, clinical development, and regulatory requirements, typically supported by an advanced degree in life sciences or medicine. Familiarity with clinical trial management systems, regulatory submission platforms, and certifications like PMP or RAC are highly valuable. Outstanding leadership, strategic thinking, and cross-functional communication skills help drive complex projects and collaborate with diverse stakeholders. These abilities ensure effective development and execution of rare disease programs, accelerating therapies to underserved patient populations.

What is the difference between Rare Disease Director vs Clinical Research Scientist?

AspectRare Disease DirectorClinical Research Scientist
Required credentialsAdvanced degrees (MD, PhD), leadership experienceTypically PhD or Master's, specialized in clinical research
Work environmentLeadership roles in biotech/pharma companies, overseeing projectsResearch settings, hospitals, or clinical trial sites
Employer and industry usageBiotech, pharmaceutical companies, rare disease focusResearch institutions, clinical trial organizations
Common search intentUnderstanding leadership roles in rare disease researchDetails about clinical research roles in rare diseases

The Rare Disease Director typically holds leadership positions overseeing research and development in rare diseases within biotech or pharma companies, requiring advanced degrees and management experience. In contrast, a Clinical Research Scientist focuses on conducting and analyzing clinical trials, often with a scientific or medical background. Both roles are integral to rare disease research but differ in responsibilities, seniority, and work environment.

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Cities with the most Rare Disease Director job openings:

What are the most commonly searched types of Rare Disease jobs?

The most popular types of Rare Disease jobs are:

What states have the most Rare Disease Director jobs?

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Rare Disease Director jobs near you
Infographic showing various Rare Disease Director job openings in the United States as of August 2026, with employment types broken down into 2% As Needed, 83% Full Time, 12% Part Time, 1% Temporary, and 2% Contract. Highlights an 91% Physical, 3% Hybrid, and 6% Remote job distribution, with an average salary of $186,382 per year, or $89.6 per hour.

Medical Affairs Director, Rare Disease

Abbott

Madison, WI

Full-time

Medical, Retirement

Posted 4 days ago

Abbott rating

7.8

Company rating: 7.8 out of 10

Based on 138 frontline employees who took The Breakroom Quiz

175th of 544 rated manufacturers

Job description

Abbott is a global healthcare leader that helps people live more fully at all stages of life. Our portfolio of life-changing technologies spans the spectrum of healthcare, with leading businesses and products in diagnostics, medical devices, nutritionals and branded generic medicines. Our 115,000 colleagues serve people in more than 160 countries.JOB DESCRIPTION:
Working at Abbott

At Abbott, you can do work that matters, grow, and learn, care for yourself and your family, be your true self, and live a full life. You'll also have access to:

  • Career development with an international company where you can grow the career you dream of.

  • Employees can qualify for free medical coverage in our Health Investment Plan (HIP) PPO medical plan in the next calendar year.

  • An excellent retirement savings plan with a high employer contribution.

  • Tuition reimbursement, the Freedom 2 Save student debt program, and FreeU education benefit - an affordable and convenient path to getting a bachelor's degree.

  • A company recognized as a great place to work in dozens of countries worldwide and named one of the most admired companies in the world by Fortune.

  • A company that is recognized as one of the best big companies to work for as well as the best place to work for diversity, working mothers, female executives, and scientists.

The Opportunity

The Medical Affairs Director, Rare Disease owns and leads the Medical Affairs strategy for the rare disease genetics portfolio within the Cancer Diagnostics division, including scientific content development, evidence generation, external scientific engagement, and KOL partnerships. This role is accountable for shaping the scientific narrative, setting evidence-generation priorities, establishing Medical Affairs infrastructure and governance, and advancing the organization's scientific leadership in rare disease. The Director serves as the primary Medical Affairs leader for rare disease, partnering with R&D, commercial, data/IT, and enterprise Medical Affairs teams to influence key business decisions and accelerate portfolio growth through scientific excellence.

MAIN RESPONSIBILITIES

Strategy & Leadership

  • Own the rare disease Medical Affairs roadmap, objectives, and performance metrics, ensuring alignment with organizational priorities and measurable impact.
  • Represent the rare disease portfolio in executive, cross-functional, and governance forums, providing scientific leadership and influencing strategic decision-making.
  • Identify and champion new scientific, clinical, and business opportunities informed by emerging evidence, market dynamics, and unmet stakeholder needs to support long-term portfolio growth.
  • Provide strategic leadership for enterprise scientific and data initiatives, representing rare disease priorities and influencing future-state capabilities.
  • Act as the strategic Medical Affairs leader and primary partner to Commercial and cross-functional leadership, leveraging insights from KOL engagement, scientific conferences, publications, and emerging clinical trends to influence portfolio strategy, evidence priorities, and compliant scientific communication.

Evidence Generation & Infrastructure

  • Own the rare disease evidence generation strategy, identifying evidence gaps, prioritizing research initiatives, and leading execution of studies aligned with business and scientific objectives.
  • Lead the development of Medical Affairs infrastructure, governance frameworks, operating procedures, and evidence generation standards to support scalable growth and scientific excellence within rare disease.

Scientific Content & Communications

  • Own and lead scientific content strategy for the rare disease portfolio, establishing priorities and directing the development of webinars, publications, educational materials, and thought leadership content that advance organizational objectives.
  • Monitor and synthesize emerging clinical evidence, scientific literature, guidelines, and market trends to inform Medical Affairs strategy, evidence generation priorities, and scientific communications.
  • Provide Medical Affairs leadership and final scientific oversight for concept, functional, and MLR reviews, ensuring scientific rigor, compliance, and alignment with business objectives.
  • Lead cross-functional scientific content development efforts, directing internal subject matter experts and external partners to deliver high-impact scientific and educational materials.
  • Lead publication and scientific communication strategy, driving abstracts, manuscripts, presentations, and other scientific outputs that enhance organizational credibility and scientific impact.

External Scientific Engagement

  • Own the organization's scientific engagement strategy at major conferences, maximizing visibility, thought leadership, and stakeholder relationships.
  • Build and lead a comprehensive KOL, advisory board, and external engagement strategy, generating actionable insights that inform scientific priorities and portfolio strategy.

Education & Commercial Enablement

  • Lead the development of scientific education programs and training strategies, ensuring internal teams are equipped with accurate, impactful, and compliant scientific knowledge.
  • Direct the creation of scientific education resources and claims strategies that strengthen customer engagement and support portfolio growth.
  • Ensure compliance with applicable regulations, Company policies, operating procedures, and ethical standards while fostering effective collaboration with employees, KOLs, and external partners.

Minimum Qualifications

  • Masters Degree in Genetic Counsling, Genetics, or related scientific/medical field

  • 8+ years experience in Medical Affairs, clinical,scientific,orrelated roleswithin genetics, rare disease, diagnostics, biotechnology, academia,or other life sciences settings, includingexperienceleading cross-functional initiatives and scientific strategy. DirectMedical Affairsexperiencestronglypreferred.

  • Strong background in rare diseaseand/orgenetics, with the scientificexpertiseandcredibilityto influenceinternalstakeholders,engageexternalexperts, andrepresent the organization withinthe broader scientific community.

  • Demonstrated publication and literature review experience, including authorship or oversight of abstracts, posters, and peer-reviewed manuscripts; comfort translating complex genetic and clinical data into clear scientific narratives.

  • Demonstrated ability toinfluence cross-functional stakeholders,driveorganizationalinitiatives, and achieve resultsin a matrixed environment.

  • Ability to manage cross-functional projects across R&D, commercial, regulatory, and quality stakeholders in a matrixed environment, and to train non-scientific audiences (e.g., sales teams) on complex medical and scientific content.

  • Strong verbal and written communication skills, with the ability toeffectively engage stakeholders at alllevels of the organization.Demonstrated ability to manage multiple priorities and deliver resultsin a fast-paced, evolving environment.

  • Experiencedevelopingand leadingKOL engagement strategies,advisory boards, and scientificexternal engagementactivities; demonstrated ability to representthe organizationwith credibilityat scientific conferences and professional meetings.

  • Authorization to work in the United States without sponsorship.

  • Experience developing or executingan evidencegeneration and dissemination strategy, including identifying evidence gaps and aligning scientific output to commercial and organizational priorities.

  • Demonstrated ability to perform the Essential Duties of the position with or without accommodation.

Preferred Qualifications

  • Board certification/eligibility as a genetic counselor (e.g., ABGC/ABMGG) preferred for candidates from a genetic counseling background. No specific license required for candidates entering from a PhD or equivalent scientific background.

The base pay for this position is

$149,300.00 - $298,700.00

In specific locations, the pay range may vary from the range posted.

JOB FAMILY:Medical & Scientific AffairsDIVISION:ONCO Cancer DiagnosticsLOCATION:United States > Madison : 5505 Endeavor LnADDITIONAL LOCATIONS:WORK SHIFT:StandardTRAVEL:Yes, 50 % of the TimeMEDICAL SURVEILLANCE:NoSIGNIFICANT WORK ACTIVITIES:Continuous sitting for prolonged periods (more than 2 consecutive hours in an 8 hour day)Abbott is an Equal Opportunity Employer of Minorities/Women/Individuals with Disabilities/Protected Veterans.EEO is the Law link - English: http://webstorage.abbott.com/common/External/EEO_English.pdfEEO is the Law link - Espanol: http://webstorage.abbott.com/common/External/EEO_Spanish.pdf

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