Kim Mooney, MS, CGC
Associate Director, Patient Advocacy, 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
Head of Advocacy, Europe
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
Senior Manager, Patient Advocacy, 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 Liaison
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.