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Group Description

This group is primarily for parents of children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). The membership includes parents who are in all stages of the DIPG journey. Grandparents, aunts and uncles, close family friends, medical professionals and a few others who are intimately aware of or involved with DIPG children have also chosen to join us here. It is a difficult place to be, but this group has become a place where many find reliable information, a shoulder to lean on, and understanding that no one, other than another DIPG family, can provide.

You will find the most recent messages posted to the group on the main page. The archived messages may be searched using key words. A list of resources available via the group is on the left side of the main page. There are several items of interest under the "Database" tab: a table of ongoing clinical trials; a "parent connection" resource for those who are traveling; and a summary of the status, including diagnosis and treatment information, of many DIPG children. Under the "Files" you will find the List Guidelines and a number of helpful papers. The "Links" tab leads to compilations of internet resources, ranging from treatment options to DIPG childrens websites & tributes. Using the resources under the "Database" and "Links" tabs is a way to focus research and use the work done by those who have walked the DIPG path.

We know how precious every moment is after a DIPG diagnosis. We hope that this group and the resources here will help you to make the most of every second with your child, while also providing information and encouragement for you as a parent. We are holding hope for the future . . .

Group Information

  • 655
  • Children's
  • Apr 16, 2008
  • English

Group Settings

  • This is a restricted group.
  • Attachments are not permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages from new members require approval.
  • All members can post messages.

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