Director, Patient Advocacy – Inherited Metabolic Disorders

🔥 1 minute ago

🇺🇸 United States – Remote

💵 $225k - $245k / year

⏰ Full Time

🔴 Lead

👔 Director

👻 Ghost score 0%

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ITF Therapeutics LLC

WebsiteLinkedInAll Job Openings

51 - 200 employees

Founded 2024

💊 Pharmaceuticals

🏥 Healthcare

Pharmaceuticals • Healthcare

ITF Therapeutics LLC is a pharmaceutical division of Italfarmaco S. p. A focused on developing, delivering, and supporting treatments for rare diseases. The company's website emphasizes medicines and science, a product pipeline, clinical studies, expanded access policies, and patient advocacy and engagement—stressing patient-centric care and support for rare disease communities. ITF Therapeutics describes activities including clinical research, medical grants, sponsorships, and community outreach, and references branded medicines (e. g. , DUVYZAT) and compliance materials such as code of conduct and privacy policies.

📋 Description

• Develop and execute the U.S. IMD patient advocacy strategy aligned with organizational priorities, business objectives, and community needs • Build and maintain relationships with patient advocacy organizations, community leaders, caregivers, and individuals living with IMD • Serve as the primary U.S. IMD patient advocacy lead across Medical Affairs, Commercial, Market Access, and Regulatory teams • Translate community insights into actionable recommendations across the product lifecycle • Lead patient engagement initiatives that elevate patient and caregiver voices • Integrate patient advocacy strategies into evidence generation, education, policy, and commercialization activities • Monitor the external advocacy, healthcare, and policy landscape for trends, unmet needs, opportunities, and risks • Support patient-focused research, advisory boards, community listening initiatives, and other insight-generation programs • Ensure activities comply with legal, regulatory, compliance, and industry guidelines • Represent the organization at advocacy meetings, scientific congresses, community events, and industry forums • Establish and monitor KPIs measuring the effectiveness and impact of advocacy initiatives and partnerships

🎯 Requirements

• Bachelor's degree required; advanced degree in public health, healthcare, life sciences, public policy, communications, or a related field preferred • 8+ years of experience in patient advocacy, patient engagement, public affairs, healthcare, rare disease, or a related field, including experience developing and executing advocacy strategies • Demonstrated ability to build and sustain trusted partnerships with patient advocacy organizations, community leaders, and other external stakeholders • Strong strategic thinking and business acumen, with experience translating patient and caregiver insights into actionable organizational strategies • Excellent communication, presentation, and stakeholder management skills, with the ability to influence across all levels of an organization • Experience leading cross-functional initiatives and working effectively across Medical Affairs, Clinical Development, Commercial, Market Access, and Regulatory teams • Knowledge of healthcare compliance requirements and industry regulations governing interactions with patient advocacy organizations • Preferred: experience supporting rare disease, genetic disease, lysosomal storage disorder, or MPS-focused programs and communities • Preferred: strong understanding of the drug development lifecycle and opportunities for patient engagement from early research through commercialization • Preferred: existing relationships within the rare disease and patient advocacy community • Preferred: experience designing and implementing patient insight generation activities, including advisory boards, community listening sessions, and patient-focused research • Preferred: experience working within a global or matrixed biopharmaceutical organization • Preferred: demonstrated success in advancing patient-centered initiatives that influence policy, research, access, or care for rare disease communities

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