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Director/ Sr. Director, Patient Advocacy & Engagement

East Coast, US

About the Role

Reporting to the Chief Regulatory and Commercialization Officer, Prilenia is looking for a Director, Patient Advocacy and Engagement to join the U.S. team. 
This is a unique opportunity for an experienced patient advocacy lead to develop and drive execution of Prilenia’s patient engagement strategy in areas of high unmet needs. Prilenia has very strong connection with the patient community and significant patient focus. As part of this role, you will continue to enhance the way we interact with patient organizations and further the establishment of meaningful partnerships with patient organizations and communities. 
The ideal candidate will be passionate about patient advocacy in rare diseases (ideally in the neurodegenerative space) with demonstrated success in building relationships in support of drug product launches.


  • Lead patient advocacy and engagement to support Prilenia’s development and commercial strategies 

  • Be a bridge between Prilenia and the Huntington’s disease and ALS communities as well as general patient advocacy groups like NORD, Global genes etc. 

  • Prioritize, build, and maintain trust-based relationships with influential organizations

  • Lead and develop long-term strategic partnerships and programs 

  • Develop deep understanding of patient populations, patient organizations and key external trends impacting patient engagement.

  • Raise disease awareness, develop scientific engagement and educational opportunities and ensure patients voice is part of our development plans.

  • Plan and organize patient group advisory board groups, advocacy events to ensure Prilenia’s strategic plans reflect the needs and priorities of the patient community, and lead the implementation of learnings and insights from these meetings 

  • Drive efforts to ensure diverse representation of perspectives in all advocacy activities.

  • Prepare for and represent the company at strategic patient meetings and share key insights and community feedback with the company.

Key Qualifications

  • 7+ years' relevant experience with successful track record in patient group/community relations in rare diseases (experience in neurodegeneration -preferred).

  • A minimum of bachelor’s degree; Master's degree or MBA or MPA not essential but an added plus.

  • Demonstrated success in building relationships with patient groups in support of drug development and product launches in the rare disease space. 

  • Demonstrated ability translating complex topics into compelling communications for various audiences.

  • People centric person.

  • Excellent writer, editor and storyteller; superior verbal communication skills; proven ability crafting various kinds of patient facing materials (e.g. posters, presentations, videos, social media efforts, campaigns)

  • Ability to serve as a company ambassador with external stakeholders, align internal stakeholders and achieve results through collaboration

  • Previous experience working with leading patient and family organizations, professional societies,

  • and policy related organizations relevant to Huntington’s disease and neurosciences a plus.


  • This is a full-time remote position in the East Coast U.S. (ideally Boston area).

  • Flexible schedule with frequent calls across Israel, North America and Europe time zones.

  • Up to 30% travel expected, including international.

If you wish to apply for this position, please email your CV to

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