Senior Director, Patient Advocacy

Summary

Join ML Bio Solutions, a BridgeBio company, as the Director/Sr. Director, Patient Advocacy, leading the global patient advocacy function. You will be responsible for shaping and implementing the global advocacy and engagement strategy, ensuring productive relationships with patient advocacy organizations supporting individuals with LGMD2I/R9 and other alpha-dystroglycanopathies. This role requires aligning the advocacy strategy with Medical Affairs/scientific platform and corporate strategies, leading global outreach to patient advocacy groups, and educating and supporting internal teams. The ideal candidate thrives in a high-energy, dynamic work environment, working both independently and collaboratively, with a focus on the needs of patients and families.

Requirements

• Bachelor’s degree (or higher) in a relevant life science field is required; a post-graduate degree in counseling, social work, genetic counseling, public health, nursing, pharmacy, or life sciences is strongly valued
• A passion for helping and partnering with the patient community
• Demonstrated ability to build relationships with patient advocacy organizations, professional associations, or other stakeholders is required
• Working knowledge of HIPAA and US and European guidelines for interactions with patients and patient organizations. A commitment to the protection of patients’ privacy and interests and a strong sense of ethics is important for this position
• The ability to travel up to 25% (often on weekends) is required

Responsibilities

• Maintain the highest level of ethics. Act with honesty, integrity, and transparency in collaboration with patients, families, and patient organizations
• Inspire a patients first mentality by communicating the “voice of the patient/caregiver” to internal teams and incorporating patient stories, imagery, and unmet needs in company activities and materials
• Develop and execute global patient advocacy strategy for the late clinical stage LGMD2I/R9 program at ML Bio Solutions, as well as development in other alpha-dystroglycanopathies by collaborating with internal teams that include clinical development, clinical operations, medical affairs, patient safety, legal, compliance, communications, commercial/marketing, and corporate development
• 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
• Contribute to the organizational strategic planning process by providing patient and patient advocacy perspectives and sharing insights gleaned from interactions with those groups
• Display a thorough understanding of the latest compliance, legal, regulatory, and related matters affecting the biopharmaceutical sector regarding patient engagement, e.g., uphold confidentiality regarding sensitive scientific data and HIPAA-protected or GDRP-protected patient information
• Initiate and oversee the medical, legal, and regulatory review process for all advocacy communications and materials
• Oversee the advocacy budget and coordinate associated responsibilities, including managing grant and sponsorship requests by Patient Advocacy organizations

Preferred Qualifications

• A minimum of 5 years in patient advocacy/advocacy relations or a similar function in an industry role is preferred; Experience in rare disease is preferred
• Communicative ability in a second language would be highly valuable

Benefits

• Patient Days, where we are fortunate to hear directly from individuals living with the conditions we are seeking to impact throughout the year and learn 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
• An unyielding commitment to always putting patients first. Learn more about how we do this here
• A de-centralized model that enables our program teams to focus on advancing science and helping patients. Our affiliate structure is designed to eliminate bureaucracy and put decision-making power in the hands of those closest to the science
• A place where you own the vision – both for your program and your own career path
• A collaborative, fast-paced, data-driven environment where we inspire ourselves and each other to always perform at the top of our game
• Access to learning and development resources to help you get in the best professional shape of your life
• Robust and market-competitive compensation & benefits package (Base, Performance Bonus, Equity, health, welfare & retirement programs)
• Flexible PTO
• Rapid career advancement for strong performers
• Potential ability to work on multiple BridgeBio Pharma programs across multiple therapeutic areas over time
• Partnerships with leading institutions
• Commitment to Diversity, Equity & Inclusion