• ORGANIZATION PROFILE
  • PCD Foundation PCD Foundation

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(33.752,-112.108)
 

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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.

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.

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

Website

http://www.pcdfoundation.org

Contact

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