Description

At Orphalan we identify, develop, and provide access to innovative treatments for patients with rare diseases to make a positive and meaningful difference in their lives. We work together by listening to patients and putting them first, enabling us to provide treatments and services that work for them. We strive to develop rare disease treatments to improve the life of patients who can often feel neglected. We believe that patients across the world who are suffering with rare diseases should have access to innovative treatment that improves their care and positively impacts their lives and those of their loved ones.

Orphalan is a privately held company on the market in Europe for 5+ years with a treatment for Wilson Disease, now with more than 1,100 patients under care in EU. With the FDA approval of Cuvrior for adult patients in 2022, Orphalan established its US operations (Orphalan Inc) in 2022 and in 2023 Orphalan launched this first new treatment for Wilson Disease since 1997. To support the continued growth of Cuvrior in the US, we are looking to bring on a strategic and innovative National Patient Advocate to join the Orphalan team.

For more information, please visit our company website at http://www.orphalan.com

For product information, please visit our US website at http://www.cuvrior.com

Overview:

We are seeking a dedicated and experienced Patient Advocacy Manager to lead efforts to enhance relationships with patient communities, strengthen advocacy initiatives, and support individuals affected by Wilson’s Disease. This role will work closely with the commercial team, VP, and other key stakeholders to ensure alignment of advocacy initiatives with business goals, while also building strategic alliances with patient advocacy organizations. The ideal candidate has a passion for patient-centered care, experience in patient advocacy or a related field, and a strong understanding of the pharmaceutical industry.

Key Responsibilities:

• Develop and Implement Patient Advocacy Strategies: Design and execute patient advocacy initiatives that align with company objectives and support patients within Wilson’s Disease.
• Engage with Patient Advocacy Organizations (PAOs): Build and maintain relationships with patient advocacy groups, foundations, and other relevant stakeholders to understand and support patient needs and perspectives.
• Collaborate with Commercial Team and VP: Partner closely with the commercial team, VP, and other stakeholders to ensure advocacy strategies align with overall commercial goals, sharing patient insights that may impact business strategy.
• Cross-functional Collaboration: Serve as a liaison among multiple teams, including Marketing, Medical Affairs, Regulatory, and Compliance, to ensure patient advocacy initiatives are integrated across product strategies and communications.
• Educational Initiatives: Lead educational programs to raise awareness and understanding of Wilson’s Disease among patients, families, caregivers, and healthcare providers.
• Patient Support Program Oversight: Develop and manage patient support resources, working with internal teams to ensure resources are accessible, accurate, and patient-friendly.
• Organize Patient Events: Coordinate and execute events, including patient advisory boards, workshops, and community gatherings, to foster connection and provide valuable support.
• Monitor Policy and Regulatory Changes: Stay updated on healthcare policies, FDA guidance, and industry trends affecting patient advocacy and ensure compliance with all relevant regulations.
• Data Collection and Reporting: Collect patient feedback, analyze data on advocacy impact, and report insights to inform company strategy and improve patient engagement.
• Crisis Management: Act as a point of contact during any patient-related crises, managing communication and providing resources as needed.

Qualifications:

• Bachelor’s degree in a relevant field (e.g., public health, communications, social work, or life sciences); advanced degree preferred.
• 5+ years of experience in rare disease patient advocacy, public health, communications, or a related field within the pharmaceutical or healthcare industry.
• Demonstrated experience working with commercial teams, senior leadership, and cross-functional partners to align advocacy goals with business strategy.
• Strong project management skills with experience managing multiple initiatives and stakeholders.
• Excellent interpersonal and communication skills, with the ability to engage empathetically and effectively with diverse patient populations.
• Ability to travel as needed to attend conferences, patient events, and advocacy meetings.

Other Key Elements:

• This new role will report to US President
• Primary patient association supporting Wilson disease community is WDA - https://wilsondisease.org
• While key members of the management team for Orphalan US reside in the Boston area and we have an office in downtown Boston, the right hire can work remotely
• Senior management team for global functions works in the London office

TSP Talent Solutions and our customers are affirmative action/equal opportunity employers (Minorities/Females/Veterans/Disabled)