OUR STORY
Different stories bringing people touched by Gliomatosis Cerebri together.
The story that resulted in the creation of GC Global started during the first GC Conference held at the Marie Curie Cancer Institute in Paris, France in March 2015. This conference was the force that united these families, family foundations, medical experts, and scientists into one purpose. The purpose of seeking the right cure for patients suffering from Gliomatosis Cerebri. Since that day, GC Global members and partners have been moving forward on research, fundraising, and creating a community, so that families around the globe touched by this rare disease can receive the help they need.
OUR MISSION
GC Global is an international community of researchers, family foundations, and families touched by GC. It works to connect these families, to provide them with resources on GC, to share information on ongoing research and to support research to identify effective treatments and one day a cure for Gliomatosis Cerebri.
OUR OBJECTIVES
- Create an international platform for Gliomatosis Cerebri and share resources and information.
- Collaborate with physicians and researchers to support international Gliomatosis Cerebri conferences to raise awareness and advance research.
- Support research to identify effective treatment options and find a cure for Gliomatosis Cerebri.
- Create opportunities for families touched by Gliomatosis Cerebri to connect, share information given and receive support.
OUR COMMUNITY
When many of us started this journey, we were alone. never having heard of Gliomatosis Cerebri, many of us turned to the internet and social media to find information about where researches are being done, the progress of these researches, and to meet others on the same path.
What we found was that information was very limited: there was no research being conducted and no community of Gliomatosis Cerebri families existed. This has now changed, for, in addition to this website, there is a Facebook Group, “The GC Connection” and an internationally connected community. We also have a Facebook resource Page “GC Global – Gliomatosis Cerebri” created for the purpose of spreading awareness.
We have found our supportive community, and have become one far-reaching extended family. No one understands what you are going through quite as much as someone else who has been there or is going through it themselves. We have different ways of reaching out, of sharing what we have been through. Hopefully, you will find a way that’s right for you, whether that is a support group or by sharing stories online.
Share your story by sending to: thejoshuabemboproject@gmail.com
Registry
ENROLL IN THE REGISTRY
The GC Registry aggregates data and tissue samples from patients around the world. Intensive study of these samples and data will help unlock the mysteries of this terrible tumor.
Partner
Share4Rare is a European project which aims to improve the quality of life of those affected by a rare disease. Their vision is to improve patients’ lives by promoting better science. Currently, they partner with several research institutions in the UK and now with the Gliomatosis Cerebri Conference to advance research and share knowledge.
CONNECT WITH FAMILIES
Connect with families throughout the world. We have found that other families can provide the best resources as you navigate this difficult time. We can connet you with another family who's been where you are now. Reach out, share your story, and learn from each other. We are stonger together.
COMMUNITY
Join the advocacy and become part of the community that was established to support groundbreaking research in finding a cure for Gliomatosis Cerebri. Partners are either family touched by Gliomatosis Cerebri or foundations supporting the same cause. Click below to learn how to join the community.
CONNECT WITH FAMILIES
Connect with families throughout the world. We have found that other families can provide the best resources as you navigate this difficult time. We can connet you with another family who's been where you are now. Reach out, share your story, and learn from each other. We are stonger together.
COMMUNITY
Join the advocacy and become part of the community that was established to support groundbreaking research in finding a cure for Gliomatosis Cerebri. Partners are either family touched by Gliomatosis Cerebri or foundations supporting the same cause. Click below to learn how to join the community.