Gliomatosis Cerebri International Registry

You are here

Help for Patients, Parents, and Families

Dr. Greenfield and Dr. Souweidane

Parents, friends and family members whose loved ones are diagnosed with gliomatosis cerebri are often shocked — not only by the diagnosis but by how alone they feel. Rare cancers don’t have the kind of national support systems one finds with more common cancers, such as breast cancer or lung cancer. Here are some resources and suggestions to help you get started on this journey, and know that you are NOT alone. We in the GC community worldwide are here to help.

Parent-to-Parent

We have found that other families can provide the best resources as you navigate this difficult time. The “Parent-to-Parent” program at Weill Cornell can connect you with another family who’s been where you are now. Please call (212) 746-2363 for help.

Getting Educated

If you’d like to start your journey by learning more about gliomatosis cerebri, we recommend the following sites:

Clinical Trials

Find out about current Clinical Trials at the Weill Cornell Pediatric Brain and Spine Center, plus advice on how to find more clinical trials nationwide.

Our Stories

You might also find it helpful to read some of the patient stories and blogs that families have published to tell their stories:

Joshua Bembo (read his story here, or visit The Joshua Project website)

Elizabeth Minter (read her story here, or visit the Elizabeth's Hope website)

Daryn Clark (An adult GC patient. Visit the What's YOUR Fight? website)

 

 

Weill Cornell Medicine Gliomatosis Cerebri International Registry 1300 York Avenue, New York New York, NY 10065 Phone: (212) 746-2363