Patients & Families

Global Patient Advocacy at bluebird bio

bluebird bio is committed to supporting people living with severe genetic diseases and cancer, and their families. To that end, bluebird bio recognizes it is of the utmost importance to fully understand and consider, on an ongoing basis, the needs and preferences of the patient communities we serve.

Advocacy organizations are instrumental in helping us connect with and learn from the community. We welcome an open dialog with patients, families and advocacy organizations. Additionally, we welcome working with advocacy organizations and advocates to create effective and sustainable ecosystems that support development of transformative therapies and drive change for the betterment of entire patient communities.

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Relationships with Patient Organizations

bluebird bio is proud to work with patient organizations and support their missions to improve the understanding of unmet patient needs, bring awareness across the healthcare system, and empower the patient voice. We are committed to maintain the independence of the patient organizations and be transparent in our interactions with them. Below is a breakdown of the support bluebird bio has provided to patient organizations in the United Kingdom during the 2017 calendar year.

Name of Beneficiary Institution Program / Project Description Support Type Country Currency Individual Payment Amount
ALD Life Support of the organization’s mission to advance awareness and education around Adrenoleukodystrophy Disease in the UK and Europe Financial Support UK GBP £15,358.40
UK Thalassemia Society Support of the organization’s mission to advance awareness and education around Thalassemia Disease in the UK and participation at the Thalassemia International Federation Conference Financial Support UK GBP £15,455.40
Rare Disease UK UK Rare Disease Advocacy Campaign Financial Support UK GBP £5,000.00
Genetic Alliance Patient Charter Workshop: Newborn Screening in the UK Financial Support UK GBP £6,250.00