Associate Director/Director of Patient Advocacy

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BridgeBio finds, develops, and delivers breakthrough medicines for genetic diseases. The company bridges remarkable advancements in genetic science with the entrepreneurial engine required to rapidly create lifesaving medicines for patients with unmet needs. Founded in 2015 by a team of industry veterans, the company has built a portfolio of 20 transformative drugs ranging from pre-clinical to late-stage development in multiple therapeutic areas, including genetic dermatology, oncology, cardiology, neurology, endocrinology, renal disease, and ophthalmology. The company’s focus on scientific excellence and rapid execution aim to translate today’s discoveries into tomorrow’s medicines. We have offices in San Francisco, Palo Alto, Boston, New York, and Raleigh with small satellites in other parts of the country. 

To learn more, visit us at https://bridgebio.com

Location

Boston, MA

Who You Are

Putting patients first is a core value of Origin, Phoenix, and our parent company, BridgeBio. Putting patients first means engaging patients, families, and caregivers throughout the drug development process to understand their challenges and perspectives and to adapt our efforts accordingly. The Director of Patient Advocacy will help lead outreach to patient advocacy groups and educate and support the internal teams, ensuring they are well aware of patients’ needs and experience.  The position will cover two affiliated biotechs, splitting the time about equally. 

Origin Biosciences is dedicated to developing and commercializing a treatment for Molybdenum Cofactor Deficiency (MoCD) Syndrome Type A.  MoCD Type A is an ultra-rare, autosomal recessive, inborn error of metabolism.  Patients are most often infants with severe encephalopathy and intractable seizures. Disease progression is rapid, with a high infant mortality rate. Those who survive beyond the first few months experience profuse developmental delays and suffer the effects of irreversible neurological damage. Due to the mortality rate and the minimal numbers of children diagnosed with this disorder, there is no existing patient organization representing families living with a child with MOCD Type-A. This presents an unusual challenge for the patient advocacy colleague. Since an NDA has been filed, the advocacy colleague will have the opportunity to work with the Origin team on the commercialization of a potentially life-saving treatment in a tiny population. The candidate will play a significant part in demonstrating that no disease is too rare and that we genuinely put patients first.   

Phoenix Tissue Repair is passionate about bringing forth a safe and effective drug for patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a rare genetic disease affecting the skin and other organs. Our dedicated team is developing a systemic treatment option that will provide appropriate replacement of the deficient collagen type VII protein to the patients’ skin and other tissues affected by this devastating disease. Investigational drug PTR-01 represents the only potentially disease-modifying treatment in development that may solve the systemic manifestations of RDEB and the more visible skin-related aspects of the disease.  

Responsibilities

  • Maintain the highest level of ethics. Act with honesty, integrity, and transparency in collaboration with patients and patient organizations
  • Develop patient engagement plans for each condition, detailing our work with patient advocacy groups, as well as individual patients and families 
  • Work with Origin and PTR teams to incorporate patient and family objectives into clinical development plans and can weave the patient and caregiver perspective into all activities and planning
  • Manage external communications across several channels to promote active patient and stakeholder engagement at relevant conferences, patient organizations, and disease-specific events
  • Help to develop educational and recruitment materials with colleagues working in clinical trial programs. Work to ensure that all output is patient-focused, understandable, and meaningful to patients and families
  • Speak at patient organization meetings about the clinical programs, goals, and values of BridgeBio and affiliated companies
  • Provide input on clinical documents, including protocols and patient recruitment plans, by advocating the needs and opinions of the patient community to internal stakeholders
  • Build and maintain strong global relationships with patients, families, support groups, and other stakeholders in therapeutic areas of interest
  • Conduct patient advisory boards and other activities to listen to the needs, experience, and opinions of patients and their family members at appropriate stages of clinical development
  • In some instances, interact with physicians, health care providers, and professional organizations about the conditions for which we are developing therapies and  the needs of the patient community
  • Develop and maintain partnerships with relevant advocacy and professional societies to promote disease awareness, access applicable support services for Origin and PTR as well as help build a foundation for a potential future MoCD Type A patient advocacy group
  • We seek someone is innovative and can think outside the box to creatively and rapidly identify novel strategies to engage and understand small patient and caregiver populations and to help lay a foundation for families to connect and, if they wish, form an independent organization
  • Strong written and verbal communication skills are required. We seek someone who is flexible, personable, with the ability to collaborate with colleagues and advocates easily
  • Travel can constitute up to 25% of the time for this position.  Communicative ability in a second language would be highly valuable

Education, Experience & Skills Requirements

  • A minimum of 3 years’ experience in a patient advocacy position in a biotech or pharmaceutical company, preferably in rare diseases
  • Previous work experience for a non-profit disease-focused organization is precious
  • A post-graduate degree in counseling, social work, genetic counseling, public health, nursing, pharmacy, or life sciences strongly valued
  • Knowledge of HIPAA requirements, health care systems, and drug development would be a plus

What We Offer

  • Patient Days, where we are fortunate enough to learn more about the lives we are looking to impact and a real exchange of ideas as to how we can improve our efforts
  • A culture inspired by our values: put patients first; think independently, be radically transparent; every minute counts, and let the science speak
  • Learning and development training to help employees be the best version of themselves
  • Collaborative business environment
  • Excellent compensation package (Base, Performance Bonus, Stock, RSU programs)
  • Excellent benefits package
  • Flexible PTO
  • With office locations in San Francisco, Boston, New York, and Raleigh, there are ample cross-collaboration opportunities with other BridgeBio Pharma programs
  • A fast-paced, data-driven, work environment with world-class R&D minds and capabilities
  • Work with the most productive groups of R&D operators in the industry
  • Partnerships with leading institutions
  • A platform for meaningful scientific contributions to shine
  • Commitment to Diversity & Inclusion – with initiatives like Women at Bridge, we are committed to fostering an inclusive environment where every person feels respected for who they are, empowered to contribute, inspired to lead, and supported in their efforts to do so
careers

Associate Director/Director of Patient Advocacy

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