Position Summary : Ultragenyx is looking for a creative, energetic and compassionate person to manage programs in patient advocacy.
We are looking for someone who has the desire to make a difference by helping support patients and patient groups, but also help move the process of clinical development forward.
Working with clinical sciences, clinical operations, medical affairs, and commercial, the Manager, Patient Advocacy will develop successful relationships with all key patient groups in LATAM and ensure timely execution of the patient advocacy strategy and tactics.
Responsibilities, but not limited to :
Act as the main contact person with patient organizations and Ultragenyx LATAM
In alignment with local and regional management, develop advocacy strategic plans, operational budgets and alliances with key organizations to advance brand and therapeutic area objectives.
Develop key working alliances with global patient advocacy groups.
This position will maintain a primary focus supporting all regional key countries and will provide local advocacy support in Argentina / Chile Market as requested.
Support and monitor NPP process.
Interfaces with the appropriate staff to facilitate the coordination of patient advocacy tactics for trial recruitment and disease monitoring programs
Conduct meetings / teleconferences with key stakeholders prioritized in advocacy strategies to leverage national advocacy resources, and ensure alignment with development priorities and efforts to enhance program awareness & patient support
Attend key events / meetings / conferences and conduct surveys and research to generate new patient referrals
Analyze advocacy group resource needs to help identify gaps in disease awareness resources to facilitate information requirements for prioritized advocacy groups
Identify and prioritize all patient organizations and affiliated healthcare professional groups that may serve as a conduit for advocacy engagement and direct to patient / physician outreach and report on key metrics
Manage critical relationships with stakeholders and patient advocacy groups through the compliant exchange of complex scientific information related to Ultragenyx areas of research, product development, and (eventual) commercialization
Represent the patient perspective during planning strategy meetings and contribute to the successful implementation and achievement of goals
Experience in dealing with Patients Services Programs
Experience in NPP access processes
Knowledge about NGOs management
Intimate knowledge of patient’s personal information management and relevant legislation for interaction with patients.
Experience with the design and implementation of patient support programs is preferred.
Strong understanding of LATAM patient advocacy landscape.
Proven project management experience.
BS degree in science, health related area or NGO management.
Minimum of 2 years in the pharmaceutical, biotechnology, healthcare industry or NGO experience required.
Fluency in English and Spanish; Portuguese is a plus
Approximately 50% travel is required; overnight travel is required as needed
Ultragenyx Pharmaceutical Inc. is an equal opportunity employer. We understand that diversity of thought, culture and background will help us do the best for our patients.
We prohibit unlawful discrimination based on race, color, religion, gender, sexual orientation, gender identity / expression, national origin / ancestry, age, disability, marital and veteran status.