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Rare Disease Jobs (NOW HIRING)

Otsuka Pharmaceutical Co., Ltd

$150 - $200/hr

The Rare Disease Account Manager will report directly to the Area Business Lead, Rare Disease, coordinating with cross functional colleagues in Medical (MSLs), Market Access (RAMs), and Patient ...

IQVIA

Head, Pediatrics and Rare Disease COE

Durham, NC · Remote

$186K - $519K/yr

Head, Pediatrics and Rare Disease COE Location: Home-based in USA Job Overview The Head of the Pediatric and Rare Disease COE provides strategic medical and scientific leadership, subject matter ...

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How much do rare disease jobs pay per year?

As of Sep 7, 2026, the average yearly pay for rare disease in the United States is $121,720.00, according to ZipRecruiter salary data. Most workers in this role earn between $54,000.00 and $250,000.00 per year, depending on experience, location, and employer.

What is a rare disease?

A Rare Disease job involves working in roles focused on researching, developing treatments, and advocating for conditions that affect a small percentage of the population. These roles exist in pharmaceutical companies, biotech firms, healthcare organizations, and non-profits, spanning areas like drug development, regulatory affairs, patient advocacy, and medical affairs. Professionals in this field collaborate with researchers, clinicians, and policymakers to address unmet medical needs and improve patient outcomes.

What are common challenges faced by professionals working in the rare disease field?

Professionals working in the Rare Disease field often encounter challenges related to limited clinical data, small patient populations, and complex regulatory pathways. Collaborating closely with patient advocacy groups, regulatory bodies, and multidisciplinary teams is essential to overcome these obstacles. You may also need to navigate evolving therapeutic landscapes and work with innovative trial designs. However, these challenges make the work highly impactful and offer opportunities to contribute meaningfully to unmet medical needs and to advance your career as an expert in a specialized area.

What are the key skills and qualifications needed to thrive in the rare disease position, and why are they important?

To excel in a Rare Disease role, professionals typically need a background in life sciences, clinical research, or healthcare, often supported by advanced degrees such as MD, PharmD, or PhD. Familiarity with regulatory requirements, clinical trial management systems, and rare disease registries is crucial. Excellent communication, problem-solving, and collaboration skills set top performers apart in multidisciplinary teams. These competencies are vital for driving progress in developing treatments and support initiatives for populations with unique medical needs.

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

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What states have the most Rare Disease jobs?

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rare disease jobs near you
Infographic showing various Rare Disease job openings in the United States as of August 2026, with employment types broken down into 3% As Needed, 77% Full Time, 17% Part Time, and 3% Contract. Highlights an 92% Physical, 1% Hybrid, and 7% Remote job distribution, with an average salary of $121,720 per year, or $58.5 per hour.

Director, Key Opinion Leader Marketing, Rare Disease

Ipsen Biopharmaceuticals Inc.

Cambridge, MA • On-site

$200 - $250/hr

Other

Posted 19 days ago

Job description

Title:Director, Key Opinion Leader Marketing, Rare Disease Company:Ipsen Biopharmaceuticals Inc.

About Ipsen: Ipsen is a mid-sized global biopharmaceutical company with a focus on transformative medicines in three therapeutic areas: Oncology, Rare Disease and Neuroscience. Supported by nearly 100 years of development experience, with global hubs in the U.S., France and the U.K, we tackle areas of high unmet medical need through research and innovation. Our passionate teams in more than 40 countries are focused on what matters and endeavor every day to bring medicines to patients in 88 countries. We build a workplace that champions human-centric leadership and fosters a culture of collaboration, excellence and impact. At Ipsen, every individual is empowered to be their true selves, grow and thrive alongside the company’s success. Join us on our journey towards sustainable growth, creating real impact on patients and society! For more information, visit us at https://www.ipsen.com/ and follow our latest news on LinkedIn and Instagram.

Job Description: Ipsen’s Rare Disease franchise has been expanding through both organic growth and acquisitions. From a marketing standpoint, there is a critical need for excellence in strategic planning and excellence in execution to clearly define how we will best drive education of appropriate healthcare providers, deliver successful launches, and innovate for patients in complex and competitive therapeutic areas. The Director, Key Opinion Leader Marketing, Rare Disease is a strategic leader within the U.S. Rare Liver Marketing team, responsible for defining and advancing the peer-to-peer engagement strategy across the portfolio. This role serves as the architect of Ipsen's external expert engagement ecosystem, shaping how scientific leaders, advocates, and peer influencers are engaged to advance disease-state education, support earlier diagnosis, inform brand strategy, and drive adoption across existing and future portfolio assets. This role requires deep expertise in external expert engagement, peer-to-peer education, and congress strategy, as well as the scientific acumen, executive presence, and cross-functional leadership necessary to influence senior stakeholders and drive portfolio-wide impact. This role owns the strategic direction and governance of speaker bureau excellence, KOL engagement, peer-to-peer education, and congress activation across the U.S. rare disease portfolio. This individual ensures a coordinated and highly credible external engagement approach that elevates Ipsen's scientific leadership and commercial impact.

WHAT - Main Responsibilities
  • Peer Engagement Strategy Own and evolve the enterprise peer-to-peer engagement strategy across the U.S. Rare Disease portfolio, ensuring alignment with portfolio growth objectives, competitive dynamics, and future launch priorities
  • Establish portfolio-level KOL, speaker, and advocate engagement frameworks, segmentation approaches, and investment priorities that maximize scientific influence and educational impact
  • Build a credible, science-driven peer-to-peer offering aligned to portfolio priorities including tools and resources for TLL team
  • Prioritize peer-to-peer programs and channels to expand reach and frequency across key stakeholders
  • Build and manage congress roadmap, capabilities, and continually improve associated processes
  • Ensure a single, cohesive peer-to-peer experience aligned to brand strategy and priorities
  • Shape how peer influence is leveraged across the customer journey to support disease-state awareness, diagnosis acceleration, treatment adoption, and launch readiness
  • Own and continuously evolve the portfolio speaker bureau strategy, governance, and operating model, ensuring alignment to business priorities and maximizing the impact of peer-to-peer engagement investments
  • Establish governance and oversight for speaker engagement, contracting, fair market value rates, utilization, and HCP transparency practices across the rare disease portfolio.
  • Define and lead the portfolio congress strategy, including prioritization of investments, scientific engagement plans, sponsorship opportunities, and cross-brand activation designed to maximize organizational impact
  • Direct the design and execution of integrated congress and peer-to-peer engagement plans that advance disease-state education, strengthen scientific leadership, and support portfolio growth objectives.
  • Lead strategic partnerships with agencies and external vendors, ensuring delivery of innovative, high-impact engagement programs while optimizing resource allocation and return on investment.
  • Partner with Medical, PRC, Legal, and Business Ethics to establish governance frameworks and ensure compliant execution of peer engagement activities across the portfolio.
  • Serve as the organization’s center of excellence for peer engagement strategy, establishing standards, governance, and best practices across the rare disease portfolio.
  • Define KPIs and measurement to optimize speaker and congress program performance and ROI
  • Own portfolio speaker bureau and congress budget planning and resource allocation Ensuring on-time and on-budget delivery of congresses, and sponsorships
  • Synthesize insights from KOL interactions, congress engagement, speaker bureau activity, and competitive intelligence to inform portfolio strategy, launch planning, and business decision-making
  • Establish clear governance, decision-making, and prioritization across the team and partners
  • Drive alignment with Brand, Sales, TLL, Medical, PRC and Business ethics
  • Influence senior leadership through data-driven recommendations regarding market dynamics, emerging scientific trends, KOL sentiment, and external stakeholder priorities
HOW - Knowledge & Experience
  • Significant experience (12+ years) of commercial pharma experience, including U.S. peer-to-peer, speaker, or HCP marketing roles in rare disease and/or specialty markets
  • Proven success managing a speaker bureau, delivering peer-to-peer programs and working with KOLs
  • Proven experience planning and executing local, regional, and national congresses
  • Experience building peer-to-peer and speaker programs in rare or ultra-rare diseases
  • Strong understanding of medical, legal, and regulatory (MLR) requirements governing peer-to-peer programs
  • Strong communication and interpersonal skills along with the ability to influence others
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