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