Manager,Patient Advocacy,Global Rare Diseases Job Boston area,Massachusetts USA,Marketing / Advertising / PR

About Us

Based in Parma, Italy, Chiesi is an international research-focused biopharmaceutical group with 90 years’ experience, operating in 31 countries. More than 8,000 employees across the group are united by a singular purpose: promoting a healthier world for our people, patients, and the planet. This is what drives us as we research, develop, and market innovative drugs across our main therapeutic areas.

Discover more here.

At Chiesi we are thinking generations ahead, driving sustainable innovation with purpose. This fosters a culture of reliability, transparency, and ethical behaviour at every level. As a Benefit Corporation and a certified B Corp, we have embedded sustainability in our bylaws and continuously measure our impact.

Diversity, inclusion, and equal opportunity are at the heart of who we are. We believe our differences make us stronger. We are a vibrant ecosystem of passionate, talented individuals united by strong values, each bringing unique perspectives that help us to continuously challenge the status quo for the better.

Chiesi Global Rare Diseases

Chiesi Global Rare Diseases is a Chiesi Group’s business unit established in February 2020 and focused on research, development and commercialization of treatments and patient support services for rare and ultra-rare disorders, many of whom have limited or no treatments available.

Rare unit has a focus on research and product development for lysosomal storage diseases, rare hematology, ophthalmology disorders and rare immunodeficiencies. The unit is also a dedicated partner with global leaders in scientific research, patient advocacy and care. Discover more here.

This unit is based in Boston, Massachusetts, with a strong synergy with the headquarters in Parma.

Who We Are Looking For
This is what you will do

Reporting to the Head Patient Advocacy, this individual will develop and execute programs in the US, Canada, and Latin America (Americas) based on the global patient advocacy strategy. Rare disease therapeutic areas of focus include Lysosomal Storage disorders. We are looking for someone who has the desire to make a difference for patients and community by developing and expanding relationship-partnerships with patient advocacy organizations and ensure that the needs and insights from these relationships are reflected in Chiesi’s decision-making process.

You will represent the “voice of the patient” to educate internal cross-functional teams and champion patient-centered ideas and programs.

You’ll be responsible for:

Contribute to the Global Rare Disease patient advocacy strategy, reflecting Chiesi’s commitment to the patient community.
Develop and implement plans to directly engage US and Canadian patient communities and share projects and programs with Chiesi LATAM partners while working cross-functionally with key internal partners.
Serve as primary point of contact to build and maintain collaborative, long-term partnerships with stakeholders and patient advocacy groups and compliantly exchange of information related to Chiesi Rare Diseases areas of interest.
Represent the patient perspective during planning strategy meetings and contribute to the successful implementation and achievement of business goals.
Propose and implement patient advocacy programs and partnerships that include educational programs, advisory boards, patient speaker engagement, clinical trial awareness, policy advocacy, etc.
Work with advocacy groups to provide compliant resources to help them develop, grow, and build capabilities.
Champion the patient voice based on understanding the patient perspective to inform internal decision making.
Conduct engagements in adherence with legal, compliance and regulatory guidelines to ensure Chiesi Rare Diseases…

Manager, Patient Advocacy, Global Rare Diseases