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Pachyonychia Congenitia Project

Fighting for a cure. Connecting & helping patients. Empowering Research.

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PC Advocates

The PC Advocate Program was based on the premise that each PC patient has a powerful story to tell about their lives with PC and can use it in a way to educate multiple audiences including other PC patients, scientists, doctors, and people who have never heard about PC.

PC Advocates have joined the International Pachyonychia Congenita Research Registry, participate in all they can, and are examples and leaders inside and outside of the global PC community.

2016 Advocate Training Sessions

Become an Advocate

Let us know you are interested in being an advocate. The following training material was developed to help PCers learn how to advocate. Please review at your convience.

  • PC Advocates – Training Session 1
  • PC Advocates – Training Session 2 Understanding PC
  • PC Advocates – Training Session 2 Understanding PC Project
  • PC Advocates – Training Session 3 Telling Your Story
  • PC Advocates – Training Session 4 Preparing For Action
  • PC Advocates – Training Session 5 Workbook
  • PC Advocates – Training Session 5 Grand Rounds Sample Book

PC Advocates completed the above training and met with doctors, scientists and industry professionals to understand all forms of PC and be able to effectively communicate with patients, physicians and others. They also had time to come together as a team to continue working towards a cure for PC. Some of the advocates had a special opportunity to attend the IPCC symposium after the advocate training. Here is one advocates thoughts after the meeting.

The collaboration of these researchers and physicians was impressive. They are all putting in significant time and effort to find a cure for PC… After spending 3 days in these meetings, I left inspired to continue doing my part to help PC Project find a cure. My part is to continue raising awareness for PC, do fundraising to help support PC Project, support research, and participate and update my daughter’s IPCRR information. These are things every PC patient and family can do. If we continue to work as a team PC Project will continue to do great things!

Christine

PC ADVOCATES USA

Julianne Bennett

Tennessee

PCer and parent of PCer

    Christine Block

    Wisconsin

    Parent of PCer

      Albert Bravo

      Massachusetts

      PCer and parent of PCer; Podiatrist

        Roseann McGrath

        Pennsylvania

        PCer

          Lisa Alvarado

          New Jersey

          PCer and parent of PCer

            Jack Padovano

            California

            PCer; Read My Story

              Janice Schwartz

              Utah

              PCer and parent of PCer; Read My Story

                Stephen Wittmer

                Minnesota

                PCer and parent of PCer

                  James Rittle

                  Illinois

                  PCer and parent of PCer

                    PC ADVOCATES EU

                    Tom Baker

                    Wales UK

                    PCer and parent of PCer

                      Paolo Cognetti

                      Italy

                      PCer

                        Kieren Eyles

                        England UK

                        PCer; Read My Story

                          Philip Gard

                          England UK

                          PCer and parent of PCer

                            Melanie Hettler

                            Germany

                            PCer

                              Pamela Ibáñez Triguero

                              Spain

                              PCer

                                Katri-Anna Lehto

                                Finland

                                PCer and parent of PCer

                                  Soe Mattijssen

                                  Netherlands

                                  PCer; Read My Story

                                    Julie Peconi

                                    Wales UK

                                    Wife and parent of PCer

                                      Sylvie Potier

                                      France

                                      PCer and parent of PCer

                                        Kathryn Fairbrother

                                        England UK

                                        PCer

                                          .

                                          Becoming an advocate is about using your voice to make a difference. The PC Advocate training taught me the power of using my voice to self-advocate on behalf of myself and other people with PC. I learned how to speak in factual terms about PC, how to get and evaluate information, find out who will support me in my journey, know my rights and responsibilities, problem solve, listen and learn, reaching out to others when I need help and friendship, and learn about self-determination.

                                          Jack

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                                          PACHYONYCHIA CONGENITA PROJECT

                                          P.O. Box 17850
                                          Holladay, UT 84117

                                          info@pachyonychia.org

                                          801-987-8758

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