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.

J Riviere

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.

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.

Paul Wynn

Paul Wynn

Senior Director, Patient Advocacy, Global Medical Affairs

Ultragenyx Pharmaceutical Inc.

Every patient has a story, but not every patient has a voice. Throughout my career, I have been touched by the powerful stories of patients and care partners sharing their most intimate and heartfelt stories. Giving patients the opportunity to be heard and share their insights and inspiring stories has been the central focus of my work as a journalist, communications professional, and patient advocate. People living with rare diseases face even greater hurdles finding their voices, connecting with others, and getting the right information. My hope is that these stories will inspire others to speak boldly, get more involved in rare disease communities, and be a reminder that there are many individuals and patient advocacy groups ready to help.

Jenny McCue

Jenny McCue

Senior Director, Patient Advocacy, Global Medical Affairs

Ultragenyx Pharmaceutical Inc.

I participated in my first clinical trial when I was nine years old and know firsthand the power of the patient. With a deep belief that true change comes from patient-centered partnerships, I have built a career crafting effective engagement campaigns and implementing strategies to best partner with patients, advocates, and key opinion leaders (KOLs) to achieve their goals. I bring more than twenty years’ experience working in the federal government, nonprofit organizations, biotech, and industry to develop and deploy impactful patient advocacy strategies on a global level with a focus on rare diseases.

Kristin Smith

Director, Patient Advocacy, 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.

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

Senior Manager, Patient Advocacy

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.

Isabel Bueso

Isabel Bueso

Patient Advocacy Specialist

Ultragenyx Pharmaceutical Inc.

My first advocacy experience was testifying on Capitol Hill, and I felt the power of using my voice for the rare disease community. I chose to become an advocate to create a positive change in the lives of others. My goal is to help those living with rare diseases with issues that affect them and help make their voices heard. I was born with a rare disease known as MPSVI, and I had the privilege to participate in clinical trials where the study drug was approved by the FDA. I know that raising awareness about rare diseases improves the chances of being understood and brings attention to therapies and treatments. I decided to visit legislators and educate students on Rare Disease Day during my high school and college years. On campus, I served as director of students and created the first scholarship for students with rare diseases. I graduated with honors from CSUEB in 2018 with a B.A. degree in Sociology. As an intern for Assemblymember Rob Bonta, who led the Rare Disease California Caucus, I learned more about legislation that affects the rare disease community and wrote a proposal for a bill to support patients with MPSVI. At Ultragenyx, I hope to continue to be a strong voice for the community.

Christi Lindh

Christi Lindh

Patient Advocacy Consultant

Ultragenyx Pharmaceutical Inc.

Throughout my life, I’ve had a heart for those in need – from volunteering for animal welfare, participating in local events to support The March of Dimes or rare diseases like spinal muscular atrophy (SMA), and most importantly, adopting my amazing son. With a background in pharmaceuticals, I quickly realized my soul's purpose is working with and advocating for individuals and families affected by rare disease, which has happily led me to Ultragenyx. In this role, I can see firsthand how empowering, informing, and amplifying the voices of those living with rare diseases  can make a difference. Knowing that there are people out there who need support keeps me motivated every day to do more.