Mission Statement

The PCD (Primary Ciliary Dyskinesia) Foundation seeks to promote research, increase public awareness, and provide information and support services for individuals with inherited ciliary disorders and their caregivers.

Goals:

• Support research aimed at developing better diagnostic techniques
• Establish publishable "standards of care" for the management of patients with PCD
• Identify regional "centers of excellence" with experience in the diagnosis and treatment of PCD
• Provide a forum for patient support and interaction
• Advocate at the local and national levels for better funding for orphan diseases
• Create alliances with other non-profit groups to achieve mutual goals

Strategies:

• Develop and maintain a patient research registry to establish incidence, prevalence and diagnostic picture of PCD
• Host scientific meetings and professional "think tanks" for interested physicians and scientists
• Provide web and hard-copy access to up-to-date information about diagnosis and treatment for patients and clinicians
• Sponsor patient education days