We bring a broad range of skills and experience to Ultragenyx, including genetic counseling, nursing, clinical trial coordination and commercialization of medications. Our background helps us understand and address the diverse needs of people affected by rare diseases.

Jessica Riviere, MHS

Vice President, Patient Advocacy, Patient Engagement, Global Medical Affairs

Ultragenyx Pharmaceutical Inc.

In the 1990s, I learned firsthand about the power of community engagement to bring about positive change when I worked for U.S. Senator Edward Kennedy on healthcare reform. Since then, I have had the privilege to work with diverse patient communities across chronic and rare diseases. I am humbled by the power and determination of patient communities to champion their unique and universal needs; access to innovative medicines and care, the development of therapies that meet the needs and preferences of patients and building a world where people see them beyond the disease with which they live. My goal is to help ensure that the needs of patients and their families are heard and valued.

Kim Cohee, MS, CGC

Director, Patient Advocacy, Global Medical Affairs

Ultragenyx Pharmaceutical Inc.

I began my career as a genetic counselor, helping people understand their medical history and guiding them to make informed healthcare decisions. I realized from this experience that I wanted to provide hope and support to those facing difficult diagnoses. I subsequently became a study coordinator at the University of California, San Francisco (UCSF), where I managed clinical trials for people with rare genetic disorders. This experience introduced me to the world of patient advocacy and led to my current role at Ultragenyx. As part of the patient advocacy team, I have the privilege of meeting and interacting with patients and advocacy groups from all over the world. My goal is to provide education, empowerment and support to patients living with rare diseases.

Tom Pulles, MD

Vice President, EU Medical Affairs, Patient Advocacy

Ultragenyx Europe GmbH, Basel, Switzerland

After receiving my medical degree (MD), I decided to take a different path than many physicians and became a general practitioner in the Royal Netherlands Navy. After that time, I chose not to work as a clinician/specialist in a hospital because I wanted to help as many patients as possible. I found the ability to do this by joining the biopharmaceutical industry with different positions and roles in medical affairs, working to develop and bring new therapies to many patients. Through the years I have had the opportunity and pleasure to meet physicians and patients worldwide and gain a better understanding of their real needs and challenges. Now at Ultragenyx, I am responsible and fully committed to Patient Advocacy in Europe. The possibility of working so closely with rare disease patients and their caregivers and family enlightens my medical heart and makes me even more passionate about serving those in need and helping them lead a better life.

Kristin Voorhees, MA

Associate Director, Patient Advocacy, Global Medical Affairs

Ultragenyx Pharmaceutical Inc.

My passion for creating change within the healthcare system began with my own experience of enduring years of misdiagnoses and ill health before receiving an accurate diagnosis. I quickly realized the important role that educated and empowered patients and caregivers play in the healthcare setting. I began a career in health communication as a way to help people understand how to actively participate in their own diagnosis, disease management and treatment journeys. I’ve been privileged to collaborate with and alongside patients, families, clinicians and researchers on developing educational programs that accelerate diagnoses, improve patients’ daily lives and advance research. This work led to my current role at Ultragenyx, where I am excited to support and advocate for the rare disease community. My daily goals are to make a positive difference in the lives of patients, caregivers and families and ensure that their voices are heard.

Belen Gonzalez Sutil, MA

Patient Advocacy Manager

Ultragenyx Latin America, Argentina

After earning my master’s degree in nonprofit leadership and management and exploring different areas of the nonprofit world in Argentina and the United States, I found that my true passion is helping those whose voices are not always heard: patients and families affected by rare disease. For the past few years I have been helping patients understand how to proactively participate in their diagnoses, how to manage their diseases, and how to explore treatment options. At Ultragenyx, I am eager to help and advocate for those living with rare diseases around Latin America. My daily goal is to better serve those in need so they can have a better quality of life.

Kristin Smith

Patient Advocacy Consultant, Global Medical Affairs

Ultragenyx Pharmaceutical Inc.

As the mother of four, including a set of triplets, I’ve navigated many challenging situations. However, when one of my sons was diagnosed with an ultra-rare and life threatening genetic disorder, our lives were turned upside down. It was critical that I become educated about my son’s diagnosis and learn how to advocate for his health and treatment. As my son’s condition stabilized, I made the decision to change careers. I have been honored to give back to the rare disease community by working in the biopharmaceutical industry as a patient advocate over the last decade. Many of the lessons our family learned along the way were not easy and my hope is to share this hard-earned knowledge in an effort to make someone else’s journey just a little easier.