Director, Genetic Disease Patient Advocacy

The Opportunity: 

As Director, Genetic Disease Patient Advocacy, you will be responsible for building and maintaining relationships with the patient community and patient advocacy organizations across Relay Tx’s emerging genetic disease portfolio, for ensuring that the needs and insights from these relationships are reflected in internal decision-making processes through representation on cross-functional teams and for creating strategies, initiatives and collaborations with internal and external colleagues 

Your Role: 

• Lead patient advocacy efforts for genetic disease 
• Create and implement genetic disease patient advocacy strategic plan 
• Identify and prioritize relevant patient organizations, associations, and networks within Relay Tx’s genetic disease portfolio areas of focus 
• Serve as primary point of contact to build and maintain collaborative, long-term partnerships with key genetic disease community stakeholders, including patient advocacy groups, professional societies and thought leaders 
• Educate the patient advocacy, patient and care team community on Relay Tx’s genetic disease pipeline and programs 
• Champion the patient voice based on understanding the patient journey and perspective to inform internal decision making 
• In collaboration with Medical Affairs, create and implement plan for thought leader and KOL engagement within genetic disease community 
• Work cross-functionally with internal teams including Medical Affairs, Clinical Operations, Communications and Corporate Development 
• Lead the development of patient-facing educational materials; ensure timely and accurate communication of status updates to the appropriate patient communities 
• Represent Relay Tx at patient advocacy events 
• Establish and manage a compliant process for patient organization grant and sponsorship requests and approvals in partnership with Legal, Regulatory, Clinical, Medical Affairs and Finance 
• Monitor and report on patient advocacy trends, best practices, and opportunities within genetic disease 
• Manage communications with genetic disease community, including the company’s social media and web presence 
• Manage relevant patient advocacy budget and resources 

Your Background:

• 8-10 years of experience with patient advocacy groups and/or professional (medical) associations, including 5 years in the genetic and/or rare disease community 
• Experience working for biotech/pharma companies as a liaison with patient advocacy groups and/or professional associations 
• Demonstrated experience establishing, building and maintaining relationships with patients and patient advocacy organizations 
• Experience in genetic/rare disease therapeutic area, with a deep understanding of the patient journey, patient/medical needs, and challenges/opportunities 
• Strong network and established relationships with patient groups and advocates in genetic and/or rare disease therapeutic areas 
• Knowledge of compliance, legal, regulatory, and other issues that impact the biopharmaceutical industry and patient engagement and advocacy practices 
• Ability to work successfully in a matrixed, cross-functional environment, managing projects involving multiple functions and shared accountabilities 
• Comfort with explaining complex scientific concepts in a simplified, compelling way to a non-medical audience 
• Ability to successfully operate in ambiguity and succeed in a rapidly changing, fast-paced environment with multiple competing priorities; able to establish structure and process when needed; consistently prioritizes high-impact projects; calm under pressure; works with a sense of purpose and urgency 
• Excellent verbal and written skills 
• Strong attention to detail  
• Ability to work independently, within a multi-disciplinary team, as well as with external partners and vendors 
• Travel, as required, to meet with patient advocates and represent Relay Therapeutics at relevant events and conferences.