Patient Advocate & Engagement Manager (Rare Disease)

Salary $75-85k + Equity


​In this role you will help develop and oversee strategies to expand a technology genomics platform to global patient advocacy groups within what is known as the orphan drug and rare disease vertical.
This position will interact with patient advocacy groups, and be responsible for building relationships with them and encouraging them to use a new and innovated technology platform for rare disease research. Once an advocacy group relationship is established, your responsibilities will involve guiding patients through multiple research steps:

•         Grant advocacy groups access to technology platform and guide them on how to use it to advance rare   disease research within their specialized area.

  • Create a communication bridge between the advocacy group and research teams to help them make new rare disease discoveries and publications using our technology.
  • Encourage clinicians involved in the advocacy group to embrace the technology in their own medical practices.
  •         Provide support to advocacy group PR activities, including sharing patient stories and clinician interviews PR agency and media contacts.

This role is considered a very hands on position, and candidates must have a history of maintaining a driven and positive disposition with clear and concise writing and communications skills.


  • BS or BA in related field such as (Marketing Communications, Public Relations, and or Medical Research)
  • A minimum of 5 years’ experience in customer relationship management
  • Up to 30% travel is possible (conferences, trade shows, etc.)
  • This position is being hired for in the Boston area but remote candidates are welcome to apply.

For immediate consideration please apply via the link provided in this posting.

To apply for this job email your details to

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