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let's recode relationships

patient advocacy

Patient advocates and advocacy organizations are instrumental in helping us connect with and learn from the community. We are committed to building and sustaining trusting relationships and collaborations with advocates around shared goals to drive change for the communities we serve. These relationships also enable the integration of the patient and caregiver perspective throughout the nest to inform decisions made at bluebird bio.

Patient advocacy flight instructions

To ensure that bluebird bio’s engagement with patient advocates and advocacy organizations are responsible, meaningful, and transparent, our team is guided by the following principles:

  • Engagements are structured in a manner that ensures the independence of the Individual or Organization and are consistent with their mission. We value the autonomy of Advocates and recognize the importance of their maintained integrity to ensure that they are an independent and trusted voice of the patient community.
  • Collaborations are based on our shared objectives of 1) addressing patients’ and their families’ needs, and 2) enabling the development and delivery of advanced therapies that can transform the lives of those living with severe genetic diseases and cancer.
  • bluebird bio is not the sole supporter of an Organization nor provides support at an amount or percentage which may appear to impact the Organization’s independence. While there may be occasions when we are the only source of support for an activity, we strongly encourage the identification of multiple funding sources.
  • Will not ask for and do not expect promotion or endorsement of a bluebird bio clinical trial or product in return for collaborating with or providing financial or other support to Advocates.
  • Respect the privacy of all personal information and data we may receive through any engagement. We will not ask for and do not expect any personal patient or family information to be shared.
  • Engagements are transparent and comply at all times with any applicable laws, regulations, and codes.

To receive updates and learn more about bluebird bio’s patient advocacy efforts, contact us at patientadvocacy@bluebirdbio.com. By providing your information, you agree to allow bluebird bio to collect the name and email address provided and to be contacted by bluebird bio and its partners using this information.

Meet the team

Headshot of Jennifer from bluebird bio's Patient Advocacy Team

Jennifer

Global Patient Advocacy
Headshot of Tresja from bluebird bio's Patient Advocacy Team

Tresja

European Patient Advocacy
Headshot of Marlene from bluebird bio's Patient Advocacy Team

Marlene

Global Patient Advocacy Operation
Headshot of April from bluebird bio's Patient Advocacy Team

April

Global Patient Advocacy,
Sickle Cell Disease
Headshot of Emily from bluebird bio's Patient Advocacy Team

Emily

Global Patient Advocacy, Adrenoleukodystrophy & MPS I
Headshot of Nicoletta from bluebird bio's Patient Advocacy Team

Nicoletta

European Patient Advocacy, Adrenoleukodystrophy, Beta-Thalassemia, Sickle Cell Disease
Elsa, Patient Advocacy

Elsa

Global Patient Advocacy,
Thalassemia and Severe Genetic Diseases

Grants & Sponsorships

Proud to support nonprofits activities consistent with shared goals. 

Transparency Reporting

Breakdown of our support provided to advocacy organizations during the 2018 calendar year.

Explore Helpful Organizations

Find information from around the world for the diseases we focus on.