Global Public Affairs Lead, Pompe and MPS (Rare Diseases)

05 May, 2020


Global Public Affairs Lead, Pompe and MPS (Rare Diseases)

Sanofi Genzyme
Cambridge, MA

Global Public Affairs (PA) for Sanofi Genzyme is a critical engagement function and essential partner in the successful development and execution of the company’s strategy.  Our purpose is to create the conditions that promote healthcare innovation and enable sustainable access for patients to Sanofi’s portfolio of specialty care therapies.  We do this by engaging with patients, caregivers, policy makers and other relevant stakeholders to shape the healthcare policy environment.  Our ambition is to be a trailblazing organization that actively shapes the future health landscape by inspiring multi-stakeholders behind a common agenda.

Background: Pompe and MPS are both lysosomal storage disorders (LSDs), each resulting from an inherited genetic defect that causes an enzymatic deficiency or malfunction, resulting in accumulation of substrate in cell lysosomes. Other LSDs include Gaucher disease, Tay-Sachs disease Fabry disease. While individually most of these diseases are rare, as a group their incidence is about 1 in 1,500 to 7,000 live births. Most LSDs can present across a continuum of clinical severity. They are all progressive in nature and may cause multi-systemic damage that can be seriously debilitating and even life-threatening in severe phenotypes. LSDs require a multidisciplinary approach to care. Early identification and diagnosis of LSDs facilitate earlier disease management.

Job Purpose:

The Global Public Affairs Head, Pompe and MPS (Rare Diseases) is the senior functional expert to the Pompe and MPS Global Therapeutic Areas and contributes to actively co-create and represent Sanofi Genzyme’s passionate commitment to patients and those that serve them.

Pompe disease is a progressive, debilitating and often fatal neuromuscular disease caused by a genetic deficiency or dysfunction of the lysosomal enzyme acid alpha-glucosidase (GAA) that results in the build-up of glycogen in the body’s cells. The disease affects an estimated 50,000 people worldwide and can occur at any age from infancy to late adulthood. Pompe disease is often classified as late-onset Pompe disease (LOPD) or infantile-onset Pompe disease (IOPD). Patients with LOPD typically present any time after the first year of life to late adulthood. The hallmark symptoms of LOPD are skeletal muscle weakness, which often leads to walking disability, and reduced respiratory function. Patients often require wheelchairs to assist with mobility and may require mechanical ventilation to help with breathing. Respiratory failure is the most common cause of mortality in patients with Pompe disease. Pompe disease is classified as IOPD when symptoms begin prior to one year of age and there is impact to the heart in addition to skeletal muscle weakness. Sanofi Genzyme is continuing to innovate for Pompe patients and is preparing the launch of Avalglucosidase alfa, an investigational Enzyme Replacement Therapy for Pompe disease that has been designed for improved receptor targeting and enzyme uptake, with the aim of enhancing glycogen clearance in target tissues.

Mucopolysacchardosis type I (MPS1) is an inherited genetic disorder caused by a deficiency in an enzyme called alpha-L-iduronidase (IDUA). It presents phenotypically as a spectrum ranging from severe (historically Hurler Syndrome) to attenuated (historically Hurler-Scheie and Scheie Syndromes).

Fundamental to this role are:

Designing global policy and advocacy strategies aligned with key business objectives notably Avalglucosidase alfa’ s launch and supporting well-aligned execution at Local level.   Preparing the Rare Disease ecosystem to ensure sustainable access for our marketed products and pipeline. Establishing and maintaining meaningful partnerships and platforms with the patient, caregiver communities (and other relevant global stakeholders) that improve health and well-being. Shaping our strategies through insights drawn from patient and key stakeholder perspectives and identifying innovative solutions to meet the dynamic needs of the patient.

Additional core responsibilities are to build on the strong patient-focused culture of Sanofi Genzyme—strengthening our impact and differentiating the company as a cutting-edge leader in behalf of patients. The role reports solid line to the Global Head of PA, Rare and Rare Blood Disorders.


  • Reinforce Sanofi Genzyme’s long-standing position as a leader in innovation and patient commitment in Pompe and MPS and Rare Diseases overall.
  • Drive global public affairs “Where to Play and How To win” strategy for select priority markets.
  • Develop an external policy/market shaping framework for Pompe and MPS in priority countries to drive diagnosis and accelerate/sustain access to treatment, in close collaboration with local PA teams to ensure global strategies reflect local realities and relevance of global tools.
  • Collaborate to leverage resources and expertise across Genzyme’s external-facing functions (Medical, Regulatory, R&D, Commercial) to align and champion one Genzyme voice by:
    • ensuring external community input is considered/incorporated into programs currently in development and/or life cycle improvements.
    • shaping policy, guidelines to ensure patient awareness of clinical trials and access to treatment.
    • appropriately raising awareness of our Fabry franchise, including, our vision and breadth of commercial and pipeline programs.
  • Understand important trends likely to impact the patient and policymaker community and business strategy – monitor and analyze potential threats, opportunities from external developments and communicate them effectively to the GBU leadership.
  • Serve as strategic advisor and staff the Head of the Global Pompe and MPS Business Units in all PA and external matters to advance successful commercial operations and protect/evolve Sanofi’s reputation.
  • Develop and execute external engagement strategy for senior GBU leadership to bolster Sanofi’s commitment to science and patients in the diseases areas.
  • Ensures strong communications and collaborations (new and existing) with patient advocacy/caregiver and related groups via creative approaches and initiatives for managing and enhancing our engagement.
  • Create and partner on innovative programs and platforms that improve the environment and address the pressing needs of patient and caregiver communities.
  • Anticipates and manages thoughtful interactions, agendas and issues with professional organizations and non-profit partners.
  • Successfully works with external patient/caregiver and relevant organizations to strengthen capability and capacity, enabling effective, sustainable organizations.
  • Contributes to Sanofi Genzyme’s approach for contributions, sponsorships and grants.


  • Education:
    • Bachelor’s Degree (accredited four-year College or university; e.g. political sciences, law, economics, medicine, or pharmacy), is required
    • Post-graduate degree in public health or health care related field /Doctorate degree or business (e.g., M.D., PhD, PharmD, MBA or equivalent) is strongly preferred
  • A minimum of 12-years of professional experience in public affairs/patient advocacy, with responsibilities for market-shaping strategies, policy and advocacy campaigns, or advanced responsibilities in an industry (or advocacy global institution) public affairs role is required
  • Experience within the Rare Diseases therapeutic area is required
  • This position will require strong collaboration across the Local and Global teams. Identified candidates will have proven experience in developing and leading within a highly matrixed environment
  • Previous experience partnering with Market Access and/or Communications cross-functional teams is preferred
  • This position may require up to 30% overall travel
  • Languages: Fluent English (oral & written) French or other languages a plus

Required Competencies:

  • Strategic thinker with demonstrated understanding of the decisive role of Public Affairs and Patient Advocacy in driving business success
  • Solid track record in translating strategy to action: developing high impact Public Affairs strategies, deploying PA tools and tactics to meet business objectives
  • Strong leader with proven leadership ability to build consensus, influence the debate, mobilize teams around a position or cause
  • Team player, skilled in collaboration and able to work and lead with ease cross-functionally and within a matrix
  • Working knowledge of policy and political environment, legislative processes and role of supra-national bodies
  • Strong knowledge of stakeholder groups, including multi-lateral institutions, trade associations and patient organizations
  • Knowledge of the healthcare industry, appreciation of critical trends shaping the operating landscape and relevance to industry/business strategy
  • Demonstrated ability to work with teams of experts and senior leaders in a highly matrixed organization
  • Excellent oral and written communication and interpersonal skills
  • Comfortable in ambiguous settings and in operating effectively in fast paced environments
  • Mindset that thinks Global and implements Local


  • Insatiable Curiosity
  • Constant Connector
  • Compassion and authenticity
  • Accountable achiever
  • Game changer


At Sanofi diversity and inclusion is foundational to how we operate and embedded in our Core Values. We recognize that to truly tap into the richness diversity brings we must lead with inclusion and have a workplace where those differences can thrive and be leveraged to empower the lives of our colleagues, patients and customers. We respect and celebrate the diversity of our people, their backgrounds and experiences and provide equal opportunity for all.

Sanofi Inc. and its U.S. affiliates are Equal Opportunity and Affirmative Action employers committed to a culturally diverse workforce. All qualified applicants will receive consideration for employment without regard to race; color; creed; religion; national origin; age; ancestry; nationality; marital, domestic partnership or civil union status; sex, gender, gender identity or expression; affectional or sexual orientation; disability; veteran or military status or liability for military status; domestic violence victim status; atypical cellular or blood trait; genetic information (including the refusal to submit to genetic testing) or any other characteristic protected by law. #GD-SG; #LI-GZ

At Sanofi diversity and inclusion is foundational to how we operate and embedded in our Core Values. We recognize to truly tap into the richness diversity brings we must lead with inclusion and have a workplace where those differences can thrive and be leveraged to empower the lives of our colleagues, patients and customers. We respect and celebrate the diversity of our people, their backgrounds and experiences and provide equal opportunity for all.

Learn more here

Job posted: 2020-05-05