Karin Hoelzer, PhD, DVM
Dr. Karin Hoelzer directs Policy and Regulatory Affairs for the National Organization for Rare Disorders (NORD®). In this role, Karin provides strategic direction to advance NORDs federal policy and regulatory priorities. She works closely with key rare disease partners across the pharmaceutical and biological space to ensure the policy landscape supports innovative approaches and new […]
Jose Delgado, MD
Jose Delgado, M.D., is the Chief of Strategic Partnerships at ICHOM, where he drives innovative healthcare solutions and advocates for impactful health policies. With over 15 years of leadership in nonprofit and healthcare sectors, he brings extensive expertise in patient-centered outcomes research, value-based healthcare, disability care, addiction medicine, women’s health, and emergency medicine. He is […]
Eleanor Perfetto, PhD, MS
Dr. Eleanor M. Perfetto has worked in government, industry, consulting, academic, and non-profit environments. Most recently, she was with the leading U.S. nonprofit organization focused on patient issues as the National Health Council’s Executive Vice President for Strategic Initiatives. Since 2013, Dr. Perfetto has been a Professor at the University of Maryland School of Pharmacy. […]
Dionne Stalling
Dionne L. Stalling stands at the forefront of a movement dedicated to amplifying the voices of Black patients within the healthcare landscape. As the esteemed founder and executive director of Rare And Black, she has tirelessly championed the cause of ensuring that Black patients’ voices are not only heard but also valued and integrated into […]
Christina Zaleski, MS, LCGC
Christina Zaleski earned a Master of Science degree in genetic counseling from Sarah Lawrence College in 1999. After graduation, she did genealogy work for Rockefeller University in South Africa. She worked at the Marshfield Clinic as lead genetic counselor from 1999-2012. Christina is currently Director of Genetic Counseling at PreventionGenetics and is also appointed Honorary […]
Charlene Son Rigby, MBA
Charlene Son Rigby is the Chief Executive Officer of Global Genes. She has spent her career building organizations at the intersection of data, technology, and life sciences. Charlene was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in […]
Becky Barnes
Becky Barnes is a seasoned Patient Advocate with over 13 years of experience, currently completing her Bachelor of Social Work (BSW) at Eastern Kentucky University, expected to graduate in Spring 2025. Her advocacy journey began when her sister was diagnosed with cancer, which inspired her to continue helping others even after her sister’s battle. Becky […]
Annie Kennedy
A veteran leader in the rare disease patient focused drug development movement, Annie joined the EveryLife Foundation in 2018, where she’s led the Cost of Delayed Diagnosis: A Health Economic Study, the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, and the community-driven Guide to Patient Involvement in Rare […]
Simu Thomas, PhD
Simu Thomas is the Vice president and Global Head of Health Economics & Outcomes Research and Global Medical Communications and Training at Alexion, AstraZeneca Rare Diseases. Simu brings over 20 years of leadership experience in the areas of Value, HEOR, RWE and Access, building and leading capabilities across the world. Prior to Alexion, Simu […]