Sr. Patient Advocacy Lead (Rare Disease)
About the role
This vacancy has now expired. Please click here to view live vacancies.
ICON plc is a world-leading healthcare intelligence and clinical research organisation. From molecule to medicine, we advance clinical research providing outsourced services to pharmaceutical, biotechnology, medical device and government and public health organisations.
With our patients at the centre of all that we do, we help to accelerate the development of drugs and devices that save lives and improve quality of life.
Our people are our greatest strength, are at the core of our culture, and the driving force behind our success. ICON people have a mission to succeed and a passion that ensures what we do, we do well.
We are looking for a Sr. Patient Advocacy Lead to join our amazing Rare Disease Team!
What You Will Be Doing:
You will be supporting ICON's rare disease focused biotech and pharmaceutical clients to develop and implement a strong patient advocacy strategy and to incorporate the patient voice into the clinical development lifecycle. You will work closely with patient advocacy organizations, biotech and pharmaceutical industry clients, as well as internal ICON teams and stakeholders. You will interact with client's teams and ICON internal teams to ensure the perspective, needs, and challenges faced by rare disease patients are considered and incorporated into protocol reviews and study conduct planning.
Functioning as an extension of the client's team you will identify key relevant patient advocacy organizations, develop an engagement strategy and implement through direct liaison.
- Support the Center for Rare Diseases team as a rare disease patient advocacy strategy SME
- Working closely with client teams, develop and implement patient advocacy strategy and engagement on behalf of ICON's clinical stage, rare-disease focused clients aligned to client's clinical development strategy
- Serve as a patient advocacy strategy SME in protocol reviews, study conduct planning meetings, proposal development and client meetings
- Develop patient-focused thought leadership content
What You Will Need:
In addition to being passionate about rare diseases, you must have an understanding of clinical trials and prior experience working in the pharmaceutical/biotech industry and with patient advocacy organizations. RARE DISEASE EXPERIENCE IS AN ABSOLUTE MUST.
- Undergraduate degree or its international equivalent from an accredited institution is required
- Experience working within Pharma or Biotech is in either a patient advocacy, marketing, patient services or clinical development function is required
- Demonstrated ability to develop and implement a strong patient advocacy strategy in alignment with clinical development or brand/corporate strategy
- Strong understanding of the rare disease patient advocacy landscape
- Strong understanding of the guidelines governing industry interactions with patient advocacy organizations
- Excellent presentation, communication and writing skills
- Demonstrated ability to lead cross-functional, multi-stakeholder projects
- Demonstrated ability to effectively navigate uncertainty and competing demands/priorities
- Self-motivated and proactive
- Working knowledge of all MS Office Suites (Word, Excel and PowerPoint)
- 10-15 years of related experience preferred
- Additional experience working directly for patient organization(s) is highly preferred
- Occasional travel required
- To qualify, applicants must be legally authorized to work in the United States (or Europe), and should not require, now or in the future, sponsorship for employment visa status.
Benefits of Working in ICON:
Our success depends on the quality of our people. That's why we've made it a priority to build a culture that rewards high performance and nurtures talent.
We offer very competitive salary packages. And to keep them competitive, we regularly benchmark them against our competitors. Our annual bonuses reflect delivery of performance goals - both ours and yours.
We also provide a range of health-related benefits to employees and their families and offer competitive retirement plans - and related benefits such as life assurance - so you can save and plan with confidence for the years ahead.
But beyond the competitive salaries and comprehensive benefits, you'll benefit from an environment where you are encouraged to fulfil your sense of purpose and drive lasting change.
ICON is an equal opportunity and inclusive employer and is committed to providing a workplace free of discrimination and harassment. All qualified applicants will receive equal consideration for employment without regard to race, color, religion, sex, sexual orientation, gender identity, national origin, disability or protected veteran status.
If, because of a medical condition or disability, you need a reasonable accommodation for any part of the application process, or in order to perform the essential functions of a position, please let us know through the form below.
Impactful work. Meaningful careers. Quality rewards.
At ICON, our employees are our greatest strength. That’s why we are committed to empowering you to live your best life, both inside and outside of work. Whether your ambition is lead a global team, become a deep scientific or technical expert, work in-house with our customers or gain experience in a variety of different ICON functions, we will support you in realising your full potential. See all locations Learn more about Our Culture at ICON
Day in the life
.png)
Teaser label
Inside ICONContent type
BlogsPublish date
05/08/2025
Summary
Standing Strong on Ovarian Cancer Day: ICON's Commitment to Advancing Care Ovarian cancer remains one of the most challenging gynaecologic malignancies, both in terms of detection and treatmen
.png)
Teaser label
IndustryContent type
BlogsPublish date
05/07/2025
Summary
Patient Centricity in Clinical Research: What it is and Why it Matters In the past, clinical research was designed around the needs of sponsors, researchers, and regulatory bodies. Patients were of
.png)
Teaser label
IndustryContent type
BlogsPublish date
05/05/2025
Summary
Navigating Regulatory Landscapes: Comparing FDA, EMA, & MHRA in Clinical Trials In clinical research, no matter how promising a new therapy may be, it will go nowhere without regulatory appro
Similar jobs at ICON
Salary
Location
Manila
Department
Biometrics Roles
Location
Manila
Remote Working
Remote
Business Area
ICON Strategic Solutions
Job Categories
Biometrics Portfolio
Job Type
Permanent
Description
**Open for HOMEBASED/REMOTE work setup** ICON plc is a world-leading healthcare intelligence and clinical research organization. We’re proud to foster an inclusive environment driving innovation and e
Reference
2025-119223
Expiry date
01/01/0001
Author
Leslie GarciaAuthor
Leslie GarciaSalary
Location
Guangzhou
Department
Clinical Monitoring
Location
Guangzhou
Business Area
ICON Strategic Solutions
Job Categories
Clinical Monitoring
Job Type
Permanent
Description
As a (job title) you will be joining the world’s largest & most comprehensive clinical research organisation, powered by healthcare intelligence.
Reference
2025-119007
Expiry date
01/01/0001
Author
Xiangilan LiuAuthor
Xiangilan LiuSalary
Location
Mexico
Department
Study Start Up
Location
Mexico
Remote Working
Office Based
Business Area
ICON Strategic Solutions
Job Categories
Study Start Up
Job Type
Permanent
Description
The Study Start-Up Associate performs investigative site recruitment/feasibility, essential document collection and review, clinical status tracking, and in-house site management activities in accord
Reference
2024-115530
Expiry date
01/01/0001
Author
Rita VillavicencioAuthor
Rita VillavicencioSalary
Location
Argentina
Department
Biometrics Roles
Location
Argentina
Business Area
ICON Strategic Solutions
Job Categories
Biometrics Portfolio
Job Type
Permanent
Description
As a Senior Lead Clinical Data Science Programmer you will be joining the world’s largest & most comprehensive clinical research organisation, powered by healthcare intelligence. You will have the op
Reference
2025-119290
Expiry date
01/01/0001
Author
Tulio SanquizAuthor
Tulio SanquizSalary
Location
Brazil
Department
Biometrics Roles
Location
Brazil
Business Area
ICON Strategic Solutions
Job Categories
Biometrics Portfolio
Job Type
Permanent
Description
As a Senior Lead Clinical Data Science Programmer you will be joining the world’s largest & most comprehensive clinical research organisation, powered by healthcare intelligence. You will have the op
Reference
2025-119287
Expiry date
01/01/0001
Author
Tulio SanquizAuthor
Tulio SanquizSalary
Location
Brazil
Department
Biometrics Roles
Location
Brazil
Business Area
ICON Strategic Solutions
Job Categories
Biometrics Portfolio
Job Type
Permanent
Description
As a Senior Clinical System Lead you will be joining the world’s largest & most comprehensive clinical research organisation, powered by healthcare intelligence. You will have the opportunity to gain
Reference
2025-119286
Expiry date
01/01/0001
Author
Tulio SanquizAuthor
Tulio Sanquiz