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About the Company

ITF Therapeutics is the U.S.-based rare disease division of Italfarmaco S.p.A., a private multinational group headquartered in Milan, Italy. Established in 1938, its mission has been to improve patient lives and overall well-being through pioneering research & development, high-quality production, and global marketing of branded prescription and non-prescription products.

In January 2024, Italfarmaco launched ITF Therapeutics as a new division in the United States with a focus on the development and commercialization of products to treat rare diseases including Duchenne muscular dystrophy (DMD), a rare and severe form of muscular dystrophy. Highlighting this commitment, ITF Therapeutics successfully secured FDA approval in March 2024 for Givinostat, the first nonsteroidal medication approved to treat all genetic variants of DMD in patients six years of age and older. Givinostat is a histone deacetylase (HDAC) inhibitor that has shown potential in reducing inflammation and fibrosis in muscles, thereby slowing the progression of the disease.

The Role

ITF Therapeutics seeks a Patient Advocacy Operations & Engagement Sr. Manager, DMD to lead operational execution of patient advocacy initiatives and support regional patient advocacy engagement efforts in the area of Duchenne Muscular Dystrophy, a rare, genetic, neuromuscular disease. You will play a critical role in the operations & management of the Patient Advocacy team. You will also actively participate in key internal and external Patient Advocacy programing. Engagement activities include in-person & remote community interactions with regional advocacy groups, gathering insights from and sharing essential information with patients, caregivers, healthcare professionals, and relevant stakeholders to help improve the lives of people with DMD.

Primary Responsibilities:

• Operational Management: Oversee the day-to-day operations of the Patient Advocacy team, ensuring efficient workflow and adherence to timelines with the ability to think outside the box, ability to pivot and work in a fast-paced small biotech environment.
• Project Coordination: Manage and coordinate projects related to grants and sponsorship, vendor requisition, needs assessment, consulting agreements, calendar/logistics management etc.
• Represent Patient Advocacy team at regional advocacy groups meetings and workshops, building awareness of ITF Therapeutics, gathering insights and developing strong collaborations among industry counterparts.
• Develop Patient Advocacy content & manage pulling through the approval process.
• Manage the budget and execute logistics/contracting of sponsorships and charitable donations.
• Manage and communicate the Patient Advocacy calendar and opportunities for broader organizational engagements.

Required Skills:

• 5+ years' experience in operations and/or patient advocacy in the pharmaceutical industry for rare or neurological disorders. Prior experience with DMD preferred.
• Bachelor’s degree required
• Bi-lingual fluency in English and Spanish is preferred.
• Understanding of FDA and EMA compliance regulations as they pertain to patient advocacy.
• Demonstrated history of cross-functional collaboration/coordination with medical and marketing teams; ability to create and foster cross-departmental relationships.
• A self-starter who is comfortable leading field relations for a fast-moving organization.
• Willingness to travel approximately 30% of the time including some weekends.