Associate Director, Patient Advocacy, CALD

Location
Cambridge, MA
Posted
Nov 07, 2018
Ref
1102587
Hotbed
Genetown
Required Education
Bachelors Degree
Position Type
Full time
Associate Director, Patient Advocacy, ALD

Join a growing Patient Advocacy team as Associate Director of Patient Advocacy, to bring the promise of gene therapy to families whose son is living with cerebral adrenoleukodystrophy (CALD). This bird serves a critical role of ensuring the patient perspective is integrated into bluebird bio's novel gene therapy approach and acts as the bridge between bluebird bio and the adrenoleukodystrophy (ALD) community, as well as with other critical stakeholders. We are seeking collaborative, creative and passionate individuals to help bring bluebird's gene therapies to patients.

About The Role:
  • Translate the global vision for Patient Advocacy to US specific strategies and tactics
  • Assess patient advocacy landscape and determine opportunities for developing strong relationships and partnerships
  • Engage, effectively communicate with, and manage relations with US ALD and Leukodystrophy advocacy organizations, community groups, and individuals; Build a sense of community and collaboration among these groups and with bluebird
  • Lead collection of ALD and CALD patient and family insights to inform bluebird decision making
  • Support and advance awareness-raising, capacity-building, and advocacy initiatives
  • Represent global patient advocacy as key member of cross-functional ALD teams and contribute new ideas and approaches to help build the Lenti-D Program
  • In partnership with EU bluebirds, ensuring alignment across the EU and US teams
  • Foster strong partnerships with medical affairs, government affairs, market access, legal, regulatory, and other functions to ensure aligned objectives and to determine opportunities and needs for advocacy engagement
  • Stay current of new developments and ideas in the field of patient advocacy and incorporate such developments, ideas, and strategies into the development and execution of programs


About You:
  • Bachelor's degree required; Advanced degree in science, public affairs, law, communications, or other relevant field a plus
  • 7+ years' experience in the pharmaceutical industry or non-profit advocacy organization
  • Ability to champion the voice of patients and families
  • An understanding of relevant patient advocacy landscape and industry rules and regulations
  • An understanding of the needs and behaviors of a broad variety of external stakeholders, including patients and families
  • Strong organizational and project management skills
  • Demonstrated ability to independently drive projects to completion
  • Intense curiosity, collaborative spirit, empathy, and penchant for problem solving
  • Aptitude to lead and challenge others in a fast-paced, highly-matrixed work environment
  • Ability to successfully develop and maintain strong working relationships between both cross-functional internal colleagues and external stakeholders
  • Willingness to travel domestically and internationally about 30% of the time; and attend out of hours activities and events, including weekends and evenings on occasion
  • Embody the principles of bluebird bio culture: b colorful, b cooperative, and b yourself