Director, Patient Services, Rare Neuromuscular Disorders

Location: Remote
Reports To: Head, Market Access

About This Role:

The Director, Patient Services, Rare Neuromuscular Disorders plays a critical role in facilitating patient access by leveraging their deep expertise in coverage, payer policies, and patient support ecosystems. This position owns the relationship and ultimate operational accountability for ITF’s patient support services and SP fulfillment. 

The Director will lead the strategic design, business rules optimization, and daily operational execution of the ITF ARC (Access, Resources, and Care) program, ensuring an uninterrupted, high-touch journey for patients, caregivers, and providers navigating treatment with DUVYZAT™ (givinostat). Additionally, the Director will manage a specialized in-home lab monitoring program.

What You'll Do: 

Exclusive Hub & SP Management 

• Serve as the primary relationship manager and strategic point of contact for our exclusive, combined Hub/Specialty Pharmacy partner. 
• Manage day-to-day operations, ensure vendor accountability, and continually optimize time-to-first-fill, overall conversion, and persistency metrics. 

Business Rules & Operations 

• Maintain and update all hub business rules, communication workflows, and standard operating procedures (SOPs).  
• Continually refine the ITF ARC program framework to eliminate commercial or government access barriers and minimize pipeline drop-offs. 

In-Home Lab Monitoring Program 

• Direct the third-party partner responsible for the specialized in-home lab monitoring program.  
• Ensure seamless operations, data aggregation and compliant reporting flows back to prescribing healthcare providers (HCPs) and ITF. 

Data Integration & Reporting 

• Maintain and enhance robust data exchange and analytics pipelines with our Hub/SP and ancillary vendors.  
• Synthesize complex patient funnel metrics, daily data feeds, operational KPIs, and adherence trends into actionable insights for leadership. 

Cross-Functional Collaboration 

• Partner closely with the field-based Field Reimbursement Manager (FRM) and national accounts teams to provide personalized issue resolution, address complex appeals, and resolve localized access challenges. 
• Maintain tight alignment with Marketing, Sales, Patient Advocacy, Medical Affairs, and Legal.

Patient Access Support Programs 

• Oversee the compliance, eligibility and execution of commercial co-pay assistance, QuickStart/bridge programs, and Patient Assistance Programs (PAP). 

Required Skills:

• Bachelor’s degree required; advanced degree preferred. 

• Minimum of 8–10 years of experience in the pharmaceutical, biotechnology, or life sciences industry. Deep, practical expertise across specialty drug distribution, specialty pharmacy operations, and third-party patient service (Hub) frameworks is required. 

• At least 3–5 years of demonstrated success managing high-touch, lower-volume patient support models within the rare disease or orphan drug landscape. 

• Proven track record directly managing an external, third-party vendor relationship. Direct experience managing an exclusive or "all-in" combined Hub/SP partner model is highly preferred. 

• Prior experience overseeing clinical nursing networks, field health educators, or in-home diagnostic/lab monitoring programs is highly advantageous. 
• Robust, foundational understanding of HIPAA data privacy regulations, and OIG guidelines governing patient support services and interaction with patient communities.

Additional Information: 

The base compensation range for this role is: $230,000 - $250,000. Base salary offered is determined through an analytical approach utilizing a combination of factors including, but not limited to, relevant skills & experience, job location, and internal equity.