Senior Director, Patient Advocacy
Sionna Therapeutics is a clinical-stage biopharmaceutical company on a mission to revolutionize the current treatment paradigm for CF by developing novel medicines that normalize the function of the CFTR protein. Sionna’s goal is to deliver differentiated medicines for people living with CF that can restore their CFTR function to as close to normal as possible by directly stabilizing CFTR’s nucleotide-binding domain 1 (NBD1), which the company believes is central to potentially unlocking meaningful improvements in clinical outcomes and quality of life for people with CF. Leveraging over a decade of the co-founders’ extensive research on NBD1, the company is advancing a pipeline of novel small molecules engineered to correct the defects caused by the F508del genetic mutation, which resides in NBD1. Sionna is also developing a portfolio of complementary CFTR modulators that are designed to work synergistically with its NBD1 stabilizers to improve CFTR function.
Position Summary:
The Senior Director, Global Patient Advocacy will lead Sionna’s patient advocacy initiatives, working in collaboration with relevant internal and external stakeholders to define the company’s patient advocacy priorities and oversee advocacy strategies and collaborations to educate and engage patients. Responsibilities include building relationships with U.S. and international patient advocacy organizations in Cystic Fibrosis, assessing the CF clinical and research landscape to ensure the community perspective is well understood and incorporated into decision making, and creating and executing education and awareness strategies.
Responsibilities:
- Develop Sionna’s cross-functional patient advocacy and engagement strategy in partnership with key internal stakeholders, including Medical Affairs, Clinical Development, Commercial, Corporate Communications and Regulatory Affairs.
- Develop and maintain relationships with appropriate regional and international patient advocacy groups.
- Lead patient-facing activities in support of Clinical Development related to clinical protocol design, execution and enrollment.
- Ensure incorporation of community/family/caregiver perspectives in key relevant activities and strategic initiatives.
- Partner with cross-functional colleagues on CF patient research and insights gathering to support strategy development, scientific evidence and patient outcomes.
- Lead the planning and logistical support for advocacy meetings, sponsorship support, participation at patient meetings and scientific congresses and local community outreach.
- Develop and propose short- and long-term objectives for the function in accordance with overall Company strategies and plans.
Qualifications:
- Bachelor’s degree required.
- 12+ years of experience with a minimum of 3 years leading patient advocacy or other relevant function.
- US advocacy experience required; Global and rare disease advocacy experience preferred.
- Experience leading patient advocacy through successful launch of a rare disease product preferred.
- Comprehensive knowledge and understanding of current compliance, legal, regulatory and other issues that impact healthcare industry and patient engagement.
- Proven capacity to plan and implement advocacy plans in alignment with the company’s strategic initiatives and integrated communications program, with demonstrated ability to assess and distill relevant scientific and other data.
- Ability to work both independently and collaboratively with cross-functional internal and external. teams, and to effectively navigate complex patient issues and manage sensitive information.
- Excellent project management, writing and communications skills.
- Proven capacity to plan and implement advocacy plans in alignment with the company’s strategic initiatives and integrated communications program.
- Effective communication skills, tact, composure and understanding of the importance of confidential matters as you coordinate complex patient issues, manage sensitive information, and participate in key inter-departmental interactions.
- Ability to work both independently and collaboratively with cross-functional internal and external teams.
- Results-driven mindset balanced with requirements of a patient advocacy role/function.
- Excellent leadership and interpersonal skills, with the ability to build credibility and trust internally and externally.
- Science and data driven while at the same time, creative and flexible in strategic thinking and problem solving.
- Ability to travel up to 20%, both domestically and internationally.
