Director, Patient Advocacy – Inherited Metabolic Disorders

🕒 il y a 8 jours

🇺🇸 États-Unis – Télétravail

💵 $225 000 - $245 000 / an

⏰ Temps Plein

🔴 Expert

👔 Directeur

👻 Score fantôme 0%

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ITF Therapeutics LLC

Site WebLinkedInTous les Emplois

51 - 200 employés

Fondée en 2024

💊 Pharmaceutique

🏥 Santé

Pharmaceuticals • Healthcare

ITF Therapeutics LLC est la division pharmaceutique d’Italfarmaco S. p. A. , spécialisée dans le développement, la mise à disposition et l’accompagnement de traitements destinés aux maladies rares. Le site web de l’entreprise met en avant les médicaments et la science, le portefeuille de produits en développement, les études cliniques, les politiques d’accès élargi ainsi que la défense des intérêts et l’implication des patients, en soulignant l’importance d’une prise en charge et d’un accompagnement centrés sur les patients et les communautés touchées par les maladies rares. ITF Therapeutics présente notamment ses activités de recherche clinique, ses subventions médicales, ses sponsoring et ses actions auprès des communautés. L’entreprise fait également référence à des médicaments de marque, comme DUVYZAT, ainsi qu’à des documents de conformité tels que le code de conduite et les politiques de confidentialité.

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

🎯 Exigences

• 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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