|
Support Groups and Organizations
The Adult Ependymoma Online Support Group is a private email list consisting of over 100 patients and caregivers. The group
is a strong emotional and medical support system. Members have expressed numerous times how invaluable this connection is
to their survival in the complicated world of brain tumors. I have met life-long friends in this group. I recommend
joining it! http://www.braintrust.org/adultependymoma.htm
The Healing Exchange Brain Trust, based in Cambridge, MA, hosts the largest
brain tumor listserv: http://www.braintrust.org/
Childhood ependymoma is a terrible disease - I know of one support group for parents of kids
with ependymomas that a friend says has been helpful to him. The contact person is: ependyparents-captain@braintrust.org
CERN stands for Collaborative Ependymoma Research Network. This group's mission is "to develop new treatments for
ependymoma thereby improving the outcomes and care of patients and ultimately leading to a cure." Check CERN out at
http://www.cern-foundation.org/
Check out the very interesting videos from CERN about ependymoma, including one mention that of
60,000 primary brain tumors diagnosed in the US in a year, only 300 are ependymomas! Here's the link to CERN's page
of videos: http://www.cern-foundation.org/Content.aspx?id=862 or go to each of them at:
|
