Our Responsibility

Environmental, Social, and Governance Initiatives

Supporting Our Broader Community

Our Origin and Purpose

Ultragenyx’s origins are rooted in deep collaboration and engagement with the rare disease community, including families of patients with ultrarare genetic diseases. Dr. Emil Kakkis, our CEO and founder, has a legacy of creating research programs targeting conditions that impact a small number of people Dr. Kakkis created the EveryLife Foundation for Rare Diseases in 2009 to work on policy issues and advocate for patients who have rare diseases. Dr. Kakkis founded Ultragenyx on April 22, 2010 with the goal of creating a unique approach to drug development that 1) is responsive to severely underserved diseases with clear biology, 2) is opportunistic in applying different drug modalities to disease targets for rapid and nimble delivery of new medicines, and 3) drives close collaboration with the patient community to support optimal outcomes.

At Ultragenyx, we dedicate ourselves every day to the goal of serving the families in our rare disease communities by providing new, life changing treatments to patients. We also share a responsibility to our broader community of patients and their families and beyond, including our employees, customers, investors, collaborators, and our local neighborhoods. We have undertaken efforts that span: environmental sustainability; access to and pricing of our medicines; patient community engagement and support; inclusion, diversity and development of our team; and charitable contributions.

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Our ongoing commitment is to develop first-ever approved treatments for rare and ultra-rare diseases and strive for majority access globally to our medicines for patients who could benefit from them. We are also committed to helping the rare disease community move forward by sharing our science and expertise to advance treatment development, whether by us or others.

EMIL D. KAKKIS, M.D., PH.D.
FOUNDER AND CEO

Environmental- Building Sustainable communities

We are committed to reducing our environmental impact and carbon footprint at our facilities in the U.S. and throughout the world..

At our headquarters in Novato, California we are using 100% renewable sources for our electricity needs across the entire campus, reducing greenhouse gas emissions from electricity use to zero. At our headquarters, as well as our office in Brisbane, California, we offer battery charging to support employees who drive electric vehicles and we are planning to install carports with rooftop solar photovoltaic systems to further reduce our carbon footprint.

We recently broke ground on a gene therapy manufacturing facility in Massachusetts. This plant will use LEED Silver design standards to improve environmental sustainability, and we have begun to engage with the Mass Save Program to find additional energy savings at the facility.

Social

At Ultragenyx, patients, caregivers, and employees are at the forefront of our strategy and day-to-day operations. As a result, we have implemented a wide array of programs to ensure that we are thoughtfully and productively engaging with these stakeholders.

Drug Access and Pricing

We are committed to ensuring patients have access to our therapies, and that they have access as soon as possible.
We work hard to get our therapies through the approval process and approved as rapidly as possible. Prior to approval, we provide access to our investigational therapies through both clinical trials and compassionate use. We have provided our medicines to patients in more than 25 countries through our compassionate use programs.

We believe that pricing should not be a barrier to accessing treatment. We are committed to pricing our medicines responsibly. In the U.S, we ensure that no patient forgoes treatment for financial reasons, including affording copays or lacking insurance.

Patient Community Engagement and Support

We engage patients and their caregivers during development in a two-way conversation to understand how the diseases affect their lives and so that they can provide us with insight to develop treatments that will be meaningful to them, which is what matters most.

We make it a priority to help the whole rare disease community move forward by sharing our science and expertise to advance future development, whether by us or others. An example is our RARE Entrepreneur Bootcamp, which we’ve held every year since 2018. The Bootcamp helps patients and advocates fund and advance research and development for under-served genetic diseases. More than 60 individuals from 50 organizations have participated.

We support multiple no-charge genetic testing programs across the world to increase and expedite diagnosis and improve the care of patients with rare diseases, including >40 genetic diseases that are not currently part of the Ultreagenyx portfolio. We want patients to get a diagnosis as early as possible to support management of their disease. Ultragenyx also works closely with patients and their families through often challenging reimbursement processes to ensure access to our therapies.

Human Capital Development

In addition to providing competitive compensation, benefits, and equity incentives, we invest in the growth and development of our employees through various training and development programs that build and strengthen our employees’ leadership and professional skills.

For example, our Leadership Expansion and Development (LEAD) program, a leadership and training program for employees, is in its third year. We have received a 94% favorable feedback rate on the program, and 57% of participants in the first two cohorts have since been promoted.

We offer employees a robust series of other development opportunities, with more than 50 workshops conducted each year covering topics such as collaboration, presenting/public speaking, and leadership.

The results of our efforts to develop and engage with our employees are measured through our annual employee engagement survey, which is reviewed in depth by our Board of Directors and shared with all employees. In 2020, 91% of employees participated in the annual survey compared to the benchmark average of 81% among all companies that work with the same survey provider.

Diversity and Inclusion

We are committed to equality, inclusion, and diversity in our workplace and throughout the biotechnology industry.

We have taken a number of steps to bolster inclusion in the company. We foster dialogue and engagement through our internal community groups such as UltraMosaic, UltraProud, X2 Women in Biotech, and LatinX. We regularly invite guest speakers to share on related topics company-wide. We offer training modules on diversity and inclusion to all employees and we strive to interview a diverse set of candidates for every position. Our commitment to this initiative extends to the broader biotech community in the form of grants and donations made to the Rare Disease Diversity Coalition and Life Sciences Cares.

We view a diverse and welcoming corporate culture as critical to our long-term success, so our 2025 vision includes measures to track and ensure progress towards our diversity and inclusion objectives.

Board Diversity

Our Board of Directors places significant emphasis on diversity and actively considers whether nominees assist in achieving a mix of Board members that represents a diversity of talents, skills, backgrounds, and expertise.