About
Improving the lives of Pennsylvanians who live with a rare disease
The Pennsylvania Rare Disease Advisory Council (PARDAC) brings together patients, caregivers, healthcare professionals, researchers, industry leaders, insurers, advocates, and state government. Together, we work to improve the lives of Pennsylvanians affected by rare diseases.
PARDAC serves as an advisory body on rare diseases to the Pennsylvania General Assembly and to state and private organizations that provide services to, or are responsible for the care of, people living with rare diseases.
Our work is grounded in the experiences and needs of Pennsylvania's rare-disease community. We collect and analyze information, identify gaps and opportunities, share best practices, raise awareness, and develop recommendations to improve diagnosis, treatment, access to care, support services, and quality of life.
Our History
Pennsylvania created the Rare Disease Advisory Council in 2017 through Act 14, after House Bill 239 was passed. Governor Tom Wolf signed this legislation on July 7, 2017.
Today, PARDAC brings together people from across Pennsylvania’s rare disease community and works to improve the quality of life for everyone affected by rare diseases in the state.
Our Mission & Vision
Mission
To improve the quality of life for all those affected by rare diseases in Pennsylvania.
PARDAC works to better understand the experiences and needs of Pennsylvanians affected by rare diseases and to identify opportunities to improve diagnosis, treatment, access to care, support services, education, and quality of life.
Vision
To be a national leader in transforming the lives of those affected by rare diseases through collaboration, support, education, and advocacy.
We believe Pennsylvania can lead by bringing people and organizations together, listening to the experiences of the rare-disease community, using data and evidence to identify challenges, and turning what we learn into meaningful action.
Why PARDAC Matters
1.2 million
people in Pennsylvania are living with a rare disease.
A rare disease is a condition that affects fewer than 200,000 people in the United States. Individually, each one is uncommon. Together, more than 7,000 known rare diseases affect millions of Americans.
Because information and local expertise are scarce, many patients face long diagnostic delays, limited treatment options, and real barriers to specialized care. In Pennsylvania alone, about 1.2 million people are living with a rare disease.
For individuals and families, the journey can mean years of searching for answers, seeing many providers, traveling long distances for care, making complicated treatment decisions, and hunting for reliable information and support.
The challenges continue even after a diagnosis. Rare diseases can impact education, work, finances, family life, mental health, mobility, and almost every part of daily living.
PARDAC helps Pennsylvania understand these challenges and find ways to address them. We work to close the gaps in diagnosis, treatment, and support so that no one has to face a rare disease alone.