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. Learn more about Our Culture at ICON
Day in the life
Teaser label
Our PeopleContent type
BlogsPublish date
03/26/2026
Summary
Why Francis returned to ICON: building a long-term career in clinical research Francis Kayamba is a Clinical Research Associate based in Johannesburg, South Africa. He first joined ICON in February
Teaser label
Our PeopleContent type
BlogsPublish date
03/24/2026
Summary
Career paths are rarely straightforward, especially in the fast moving world of clinical research. For many professionals, gaining experience across organisations can provide valuable perspectiv
Teaser label
Our PeopleContent type
BlogsPublish date
03/16/2026
Summary
Driving Study Start-Up: James Pereira's Journey at ICON James Pereira's career in clinical research has been shaped by a single driving question: how do we get studies started faster? From his earl
Similar jobs at ICON
Salary
Location
Romania, Bucharest
Location
Bucharest
Remote Working
Remote
Business Area
ICON Strategic Solutions
Job Categories
Patient Recruitment
Job Type
Permanent
Description
We are seeking experienced Senior CRAs who are ready to advance their careers by stepping into a Site Engagement Liaison role and joining our diverse, dynamic FSP team.In this role, you will be respon
Reference
JR148254
Expiry date
01/01/0001
Author
Dariusz SternlichtAuthor
Dariusz SternlichtSalary
Location
Korea, Seoul
Location
Seoul
Remote Working
Remote
Business Area
ICON Strategic Solutions
Job Categories
Study Start Up
Job Type
Permanent
Description
We are currently seeking a Study Start Up Associate I to join our diverse and dynamic team. As a Study Start Up Associate I at ICON, you will play a pivotal role in facilitating the initiation of clin
Reference
JR148229
Expiry date
01/01/0001
Author
Sonia OhAuthor
Sonia OhSalary
Location
China, Shanghai
Location
Shanghai
Remote Working
Remote or Office
Business Area
ICON Strategic Solutions
Job Categories
Clinical Monitoring
Job Type
Permanent
Description
We are currently seeking a Clinical Research Associate II to join our diverse and dynamic team. As a Clinical Research Associate II at ICON, you will play a pivotal role in designing and analyzing cli
Reference
JR148128
Expiry date
01/01/0001
Author
Sally ZengAuthor
Sally ZengSalary
Location
France, Paris
Location
Paris
Remote Working
Remote
Business Area
ICON Strategic Solutions
Job Categories
Clinical Monitoring
Job Type
Permanent
Description
We are looking for motivated CRA II or Senior CRA based in the Paris/Ile-de-France area to join our sponsor dedicated CRA team!You will demonstrate, minimum 24 months independent external monitoring o
Reference
JR140296
Expiry date
01/01/0001
Author
Katrien DoomsAuthor
Katrien DoomsSalary
Location
China, Shanghai
Location
Shanghai
Remote Working
Remote or Office
Business Area
ICON Strategic Solutions
Job Categories
Clinical Monitoring
Job Type
Permanent
Description
We are currently seeking a Clinical Research Associate II to join our diverse and dynamic team. As a Clinical Research Associate II at ICON, you will play a pivotal role in designing and analyzing cli
Reference
JR148247
Expiry date
01/01/0001
Author
Xiangilan LiuAuthor
Xiangilan LiuSalary
Location
South Africa, Johannesburg
Location
Johannesburg
Remote Working
Hybrid
Business Area
ICON Full Service & Corporate Support
Job Categories
Regulatory Affairs
Job Type
Permanent
Description
As a Regulatory Technician you will work with the Clinical Trials Information System (CTIS), and will also provide support for submissions and other documents by performing necessary tasks includi
Reference
JR137031
Expiry date
01/01/0001
Author
Teodora KaykievaAuthor
Teodora Kaykieva