Pachyonychia Congenita Fund

Ipcrr maintained the international pachyonychia congenita research registry (ipcrr). Since 2004, and with irb approval, the ipcrr has provided over 3000 patients with free genetic testing, physician consultations, patient meetings, chat groups, special web meetings, and bi-monthly patient newsletters. Through the ipcrr, patients also have opportunities to participate in clinical trials and studies.

Ipcc 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 400 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 200 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.