Established in 1997 – Serving epidermoid brain tumor patients, caregivers, and medical professionals from over 35 countries.
Our website was initiated by a group of epidermoid brain tumor patients with a combined goal to share information about this type of tumor and to offer support for people who have encountered its effects.
Since the epidermoid brain tumor is rare, we feel that it is not given the attention for research or the publication of literature that the more common brain tumors receive. There is little information concerning this brain tumor.
Few studies are on record for long term follow up and there is still little understanding of the prolonged effects of this type brain tumor or some of the atypical causes. With the intent of providing support, gathering data, tracking that data, and sharing the information, this website has been established. Throughout our communication options we have a range of experience from those newly diagnosed to those who have experienced several craniotomies.
We are multi-national in makeup, with members in more than 35 countries. Our combined years of knowledge has become a resource of information to our members. We extend an invitation to medical professionals who wish to gain a more personal understanding of the epidermoid or would like to share new findings in this area about our long term effects, especially through our news feed.
We advocate for research of the epidermoid brain tumor in the hope that we can prevent recurrence. With biological cellular research is the hope that the skin that makes up the epidermoid brain tumor may have a slightly different cellular or genetic make up that could possibly be used as a base for a “designer drug” to prevent recurrence or destroy the tumor without affecting other structures of the brain. Gene research for control of a factor to prevent growth ( EGF) is also advocated along with research in nerve cell transplantation to repair the nerve damage acquired by some patients from the long term effects of this brain tumor.
We hope you will find our website to be a source of information and understanding. Even though we all have family members, friends, and caregivers in our lives, our online communication options is a source of comfort to find others who are going though the same journey. Whether you were recently diagnosed with a brain tumor or are a long-term survivor, family member or friend, we welcome you to join us.