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Pachyonychia Congenita Fund

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health

Mission: The organization's mission is to fight for a cure for the pachyonychia congenita disease, connect and help patients, and empower research.

Programs: Provided funding for research in finding a cure for pachyonychia congenita. Maintained a web site to provide information about and assist research efforts. Provided support meetings to individuals affected by pachyonychia congenita. Provided individual support as needed for patients via emails, telephone calls, or through the help of pc patient advocates or members of the pc scientific and medical advisory board. More support is outlined next in the resources and benefits through membership in the ipcrr.

maintained the international pachyonychia congenity research registry (ipcrr). Since 2004, and with irb approval, the ipcrr has provided over 1,900 patients free genetic testing, physician consultations, patient meetings, chat groups, special web meetings, and monthly patient newsletters. Through the ipcrr, patients also have opportunities to participate in clinical trials and studies.

hosted the international pachyonychia congenita consortium (ipcc) in portland, oregon. Since 2004, the ipcc has held annual scientific meetings, awarded research grants, coordinated research with both academic and private institutions,conducted monthly web meetings with the ipcc genetics team, established and met annual research goals, and distributed quarterly newsletters to over 200 physicians and scientists. Working with leaders in the ipcc,clinical trials have been completed and numerous clinical and research studies have been conducted. It is estimated that nearly 100 articles have been published in leading scientific journals by the organization or its ipcc members, a number of which cited ipcrr data and research and clinical studies done through ipcc.

Community Stories

1 Story from Volunteers, Donors & Supporters

Donor

Rating: 5

When I first learned about this organization, I was amazed at how much they do with so little. It truly is all about love and making a difference in the lives of those suffering with the constant pain of Pachyonychia Congenita. PC Project may be small, but they collaborate with the top physicians, scientists and Universities in the world to understand and find a way to help those affected with Pachyonychia Congenita and other skin disorders. PC Project is loyal to their word and care about each individual. They set goals and make them become a reality.

Review from Guidestar