PCD Foundation Information

The PCD Foundation is a non-profit organization that seeks to promote research, increase public awareness, & provide information and support services for individuals with inherited ciliary disorders & their caregivers. Primary ciliary dyskinesia (PCD) is a genetic disease caused by defects in the cilia - microscopic ‘hairs’ that line the respiratory tract, sinuses, tubes of the ear, ventricles of the brain, and reproductive organs. PCD patients, if they survive infancy, are on a lifelong mission to prevent complete lung destruction. This is daily battle that entails constant, exhausting vigilance. There is currently no cure and few treatments for PCD. By definition a ‘rare disease’, PCD continues to face three key challenges: 1. Lack of Awareness: General lack of awareness, knowledge and standards of care leads to delayed diagnosis, often misdiagnosis and sometimes fatalities. Conservative estimates of affected individuals in the US alone are 20,000 – yet we know of less than 300 with an official PCD diagnosis. 2. Limited Access to Medical Care, Knowledge & Support: Limited access to expert centers and difficulty getting insurance coverage 3. Little or No Access to Government-funded & Industry Research: PCD has little or no access to government funds. There is little money to be made, if any, by industry, so the incentive for support simply doesn’t exist for most companies. Our mission is to overcome these challenges and ultimately find a cure for PCD.