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Rare Disease Jobs (NOW HIRING)

Soleno

Rare Disease Specialist- Mountain West

$190K/yr

Summary of Job (brief description) The Rare Disease Specialist role at Soleno will drive year two commercialization of DCCR and sales initiatives of Soleno's leading product candidate, DCCR, for the ...

Soleno Therapeutics, Inc.

WI · On-site

$190 - $215/hr

Summary of Job (brief description) The Rare Disease Specialist role at Soleno will drive year two commercialization of DCCR and sales initiatives of Soleno's leading product candidate, DCCR, for the ...

Soleno

Rare Disease Specialist- Texas North

$190K/yr

Summary of Job (brief description) The Rare Disease Specialist role at Soleno will drive year two commercialization of DCCR and sales initiatives of Soleno's leading product candidate, DCCR, for the ...

Ipsen

$320 - $430/hr

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 ...

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$38.5K

$121.7K

$338.5K

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.

More about rare disease jobs

What cities are hiring for Rare Disease jobs?

Cities with the most Rare Disease 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 jobs?

States with the most job openings for Rare Disease jobs include:

What job categories do people searching Rare Disease jobs look for?

The top searched job categories for Rare Disease jobs are:

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.

Sr. Scientific Director, Rare Disease

Xerispharma

Chicago, IL • On-site

$281 - $337/hr

Other

Medical, Dental, Vision, Retirement, PTO

Re-posted 29 days ago

Key responsibilities

  • Lead the development and management of scientific communication platforms, medical narratives, and publication strategies for the rare disease portfolio.

  • Collaborate with cross-functional teams to create, implement, and monitor medical content, communication strategies, and evidence generation initiatives.

  • Engage with internal and external stakeholders, including healthcare professionals and key opinion leaders, to communicate scientific information and gather insights.

Job description

## Sr. Scientific Director, Rare DiseaseApplyremote type: Hybridlocations: Chicago, ILtime type: Full timeposted on: Posted 7 Days Agojob requisition id: JR1018**Job Description:**The Senior Scientific Director, Rare Disease serves as a senior leader within the Medical Affairs team, responsible for driving scientific and medical strategy and execution across cross-functional teams. This role will focus on scientific communication, evidence generation, and publication strategy, collaborating with internal and external stakeholders to support the rare disease portfolio. The Scientific Director will be responsible for leading key medical responsibilities such as Medical Strategy and Narrative, Scientific Communication Platform development and maintenance, Publication Strategy and Plans, Medical Communication and Content initiatives, and collaborate in evidence generation initiatives. The Scientific Director will partner and contribute to the cross-functional activities in evidence generation with Medical Affairs, Research & Development, and Clinical Operations. The incumbent is responsible for the timely delivery of high-quality, integrated, balanced medical and scientific information upon the requests of internal and external business partners, and the healthcare community, including health care professionals, decision makers, patients, and caretakers. The Scientific Director will regularly interact with internal and external key stakeholders on medical, clinical, and scientific activities as it pertains to identified projects and initiatives. Accountable for maintaining appropriate documentation and/or business systems utilized for assigned medical affairs projects. Leads assigned Medical Affairs, Leadership, and Cross-Functional meetings, special projects, and initiatives as assigned.**Essential Job Functions*** Serve as the subject matter expert on assigned product(s) and disease area, applying medical and scientific expertise to guide strategic initiatives and effectively engage internal and external stakeholders.* Develop deep knowledge and understanding of the Rare Disease Clinical Program and Lifecycle Management, Disease State, and understanding the evolving needs of both medical and patient communities.* Translate complex clinical data into clear, compelling, and tailored messages to effectively engage and inform internal and external audiences.* Lead the development and ongoing management of the rare disease scientific knowledge infrastructure, which may include the Scientific Communication Platform, medical narrative, lexicon, and internal resource library.* Lead the cross-functional development of Rare Disease publication strategies and plans in collaboration with Publication Lead(s)* Lead the development and implementation of medical content and related medical communication strategy in partnership with Medical Communications Lead(s) and/or other key internal partners to align with product timelines, strategic initiatives, and diverse stakeholder needs.* Drive the development of scientifically rigorous, compliant, and stakeholder-focused content by collaborating cross-functionally within Medical Affairs, ensuring timely, high-quality project delivery with strong accountability and responsiveness. Proactively develop targeted communication materials and channel strategies.* Serve as a key partner in evidence generation and/or pipeline initiatives, collaborating with R&D, Clinical, and Medical to align on data generation with strategic objectives.* Identify and analyze healthcare community needs and educational gaps in close collaboration with the Medical Affairs Leadership and other internal stakeholders,* Collaborate with cross-functional teams to create, execute, and monitor launch and/or other strategic readiness plans, aligning medical affairs content with commercial, clinical, and regulatory goals.* Drive content excellence by mentoring Medical Affairs team members and providing strategic guidance throughout the content development process.* Monitor, evaluate, and report on relevant disease state and industry trends/activity relevant to Xeris interest and activities* Engage with key opinion leaders and HCPs in collaboration with Regional Medical Affairs through participation in congresses, symposiums, and advisory boards to gather insights and build strategic relationships.* Ensure all medical content complies with company SOPs, regulatory requirements, and medical-legal review processes.* Maintain subject matter expertise on relevant therapeutic areas and compounds, industry ongoings, benchmarks, and best practices to apply to assigned projects and initiatives.* Ensure medical affairs related planning/workflow files, tools, and systems in partnership with Medical Operations are maintained, accurate, and adherent to relevant Xeris policies, SOPs, and compliance guidelines.**Skills and Qualifications*** Advanced degree, preferably in a scientific discipline, i.e., PhD, PharmD, or MD* Relevant professional certification/credential (i.e., CMPP, AMWA) is a plus* 12+ years of medical/scientific publications or medical communications experience in the pharmaceutical/health care industry, academia, or related experience (i.e., medical communication agency, clinical/scientific research) required* A minimum of 5 years of experience at a director level leading medical affairs/medical communications teams and responsibilities at a life science company* Recognized leader or expert in medical publications, scientific communications, and medical affairs practices* Medical Affairs or Medical Communications pharmaceutical industry fellowship or residency is a preference* Demonstrated expertise in clinical/scientific publication structure, content, and quality* Demonstrated expertise in scientific publication regulations and best practices. Expert-level pharmaceutical, biomedical, or scientific writing experience.* Working knowledge of statistical concepts and techniques required.* Ability to understand and interpret clinical data and strategic concepts.* Knowledge and experience with multi-channel scientific platforms and innovative communication tactics* Competencies: Strategic and Functional Leadership, Teamwork and Cross-Functional Collaboration, Analytical & Research skills, Attention to Detail, Self-Starter, Excellent Written and Verbal Communication, Strong Presentation skills, Organizational skills, Project Management including Finance and Budget Management Experience, Adaptability, Professionalism**Working Conditions*** This is a hybrid position based in Xeris’ Chicago office and a minimum of three days per week in the office is required. On-site requirement may change at management’s discretion.* Position may require periodic evening and weekend work, as necessary to fulfill obligations. Periodic overnight travel up to 25%.*The anticipated base salary range for this position is $281,000 to $337,000.*#LI-HYBRID *Xeris Pharmaceuticals, Inc. (the “Company”) is an equal opportunity employer and does not discriminate based on race, color, religion, sex, gender identity, sexual orientation, national origin, age, disability, veteran status, genetics or any other characteristic protected by law. All qualified candidates are given equal opportunity and the Company’s employment selection decisions are based solely on job-related factors. NOTE: This job description is not intended to be all-inclusive. The employee may be required to perform other related duties as needed to meet the ongoing needs of the Company.**The level of the position will be determined based on the selected candidate’s qualifications and experience.* *Final determination of the actual base salary offered depends on several factors, including but not limited to the candidate’s skills, experience, education, location, and business needs. Employees are eligible for equity or long-term incentive awards, where applicable. Field Sales role employees are eligible for a quarterly commission structure. Non-Sales role employees are eligible for an annual bonus. The Company also offers a comprehensive benefits package that includes additional elements such as paid time off benefits, various health, vision, and dental insurance options, 401(k) retirement benefits and more for eligible employees. Details about these and other offerings will be provided at the time a conditional offer of employment is made. Candidates are always welcome to inquire about our compensation and benefits package during the interview process. Individuals hired as temporary employees, interns, and preceptors are not eligible for commissions, bonuses, and/or long-term incentive or equity awards. Eligibility for other benefits will be based on plan documents.* #J-18808-Ljbffr

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