International society of scientists, experts, and patient advocates committed to improving the care of rare GU tumors through science and education



Upcoming Events

  • Dec 11, 8:00 AM – Dec 12, 12:00 PM
    Zoom Conference
  • May 22, 8:30 AM – 12:00 PM EDT
    Zoom Conferencing

Patients' stories

Rare tumors, like penile cancer, may suffer from issues of delayed diagnosis resulting in different outcomes in surgery, deeply impacting patients’ quality of life.
A better understanding of medical procedures is another goal, with the aim of minimizing variables between countries and doctors.
From my experience a supporting network will be beneficial to the patients, providing them with the possibility to share experiences and post-treatment limitations like lymphoedema, which is one of the biggest problems we encounter after node dissection, along with the social and mental challenges we can face daily.


Wayne Earle (founder and director of the International Penile Cancer Awareness and Support Group)