What are the responsibilities and job description for the Director, Patient Advocacy position at GondolaBio LLC?

Job Description

Description :

About Portal Therapeutics

Portal Therapeutics is a clinical-stage biopharmaceutical company dedicated to developing best-in-class therapeutics for patients living with erythropoietic protoporphyria (EPP), a genetically-driven heme biosynthesis disorder which leaves impacted individuals highly sensitive to sunlight. Phototoxic attacks triggered by the sun in people with EPP can be extremely painful and can last several days. Portal is developing an innovative potential small molecule therapeutic for people impacted by EPP.

About GondolaBio

GondolaBio is a collection of biopharmaceutical companies focused on developing next-generation therapeutics for genetic diseases. Originally carved out of BridgeBio, GondolaBio secured $300M in private financing from external investors in 2024 and became an independent company within the BridgeBio ecosystem. GondolaBio aims to leverage cutting-edge biological research to discover, create, test, and deliver transformative medicines to treat patients who suffer from genetic diseases.

Who You Are

Putting patients first is a core value of Portal Therapeutics and GondolaBio. This means engaging patients, families, caregivers, and community advocates throughout the drug development process to understand their challenges and desires and to adapt our efforts accordingly. The Director of Global Patient Advocacy reports to the Chief Operating Officer and will be responsible for shaping and implementing a global advocacy and engagement strategy at Portal, an affiliate of GondolaBio. They will prioritize productive and enduring relationships with patient advocacy organizations and community leaders. At the outset, this will be an individual contributor role with the opportunity to develop the patient advocacy and engagement team, globally, as appropriate in the long term. Throughout their tenure, the Director of Patient Advocacy will continuously lead efforts that reinforce a patient-focused culture throughout Portal by implementing company-wide patient engagement, and / or volunteer programs as well as oversee all external efforts surrounding patient advocacy and engagement. This individual will collaborate with key internal / external stakeholders to develop and support educational programming and share knowledge and insights, emphasizing patient / caregiver and community needs, innovation, and access. This position will work in tandem with the Clinical Development and Operations team on programs at Portal.

Requirements : Responsibilities

Establish a comprehensive global patient advocacy and engagement strategy with priorities identified that will ensure Portal is developing community-centric clinical programs for people living with EPP and XLP.
Establish and / or further develop and continuously strengthen advocacy relationships with patient advocacy organizations globally through compliant and thoughtful engagement and alignment on company priorities
Determine the appropriate timing and level of patient advocacy and engagement activities with communities aligned with Portal's clinical development pipeline (ie; advisory meetings, patient surveys, review of study programs and patient-facing materials, community campaigns, etc).
Communicate key learnings from the patient community to inform cross-functional (ie : medical, and clinical) team strategies
Lead the strategic planning for patient advocacy annual operational spend (e.g., grants and sponsorships, patient advisory board meetings, etc.)
Inspire a people-first mentality and culture by communicating the “voice of the patient / caregiver” to internal teams and incorporating patient stories, imagery, and unmet needs in company activities and materials
Maintain current working knowledge of industry and healthcare legislation relevant to patient advocacy such as incorporating the patient voice in medical development and communicate as appropriate to internal and external partners.
Demonstrate professionalism and strong leadership abilities while serving as the primary contact and resource for patient advocacy organizations and advocates

Education, Experience & Skills Requirements

Bachelor’s degree (or higher) in a relevant field is required (e.g., life sciences); a post-graduate degree in counseling, social work, genetic counseling, public health, nursing, pharmacy, or life sciences strongly valued

Experience in rare diseases and / or oncology is preferred

A minimum of 7 years in patient advocacy / advocacy relations, non-profit experience, or a similar function is preferred

Demonstrated ability to build relationships with patient advocacy organizations, professional associations, individuals living with conditions and their families, and other stakeholders are required

Strong written, verbal, and presentation communication skills are required; the candidate should be flexible, personable, and easily collaborate with colleagues and advocates

A passion for helping the patient community

The ability to travel up to 10 - 15% (mostly on weekends) is required

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