Pachyonychia Congenita Fund

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.