PCD Foundation

Description

The PCD Foundation is a coalition of parents, patients and health care professionals working together to advance research, provide education and increase awareness of a serious and under-diagnosed genetic disorder. Our operations are funded solely through private donations.

• 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

• 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