Understand your risk. Make informed decisions. Advocate for yourself. Support HDGC research.
RESOURCES
You can help develop this list of resources for the international HDGC community. Please send your suggestions for resources you feel would be helpful for patients and families in the HDGC community to be considered for inclusion on this page.
COMMUNITY
CaringBridge
Share, Connect & Rally Support
Personal, Protected Websites for Every Health Journey
Easily keep family and friends informed through your journey.
FINANCIAL ASSISTANCE
Financial Assistance Program
Ambry Genetics
The Assistance Fund
Gastric Cancer CoPay Assistance Program
GENETICS
CDH1 Gene
NIH, Genetics Home Reference
NCI Dictionary of Genetic Terms
NIH, National Cancer Institute
Know your family history
Know Your Genes
Genetic Disease Foundation
What is genetic discrimination?
NIH US National Library of Medicine
Genetics Home Reference
GINA Help
Easy to understand guide to the Genetic Information Nondiscrimination Act
Find A Genetic Counselor, US & Canada
National Society of Genetic Counselors
Financial Assistance Program
Ambry Genetics
Prevention Genetics
Prevention Genetics DNA Bank
DNA banking is the secure storage of an individual’s DNA for future use.
HDGC & GASTRECTOMY: PATIENT MATERIALS
Medications After Gastrectomy
Great overview of issues of medication absorption following gastrectomy. 2020 by Kirsty Harris, Clinical Pharmacist, CDH1 Mutation Carrier and Total Gastrectomy Patient
Hereditary Diffuse Gastric Cancer Fact Sheet
Great overview of HDGC to help patients, families and friends better understand the nature of the disease.
Hereditary diffuse gastric cancer: an overview for primary care
The Best Practice Advocacy Center, New Zealand
(pdf file format)
September 2018An excellent guide for every HDGC patient to read, and a perfect introductory resource to share with every member of your medical team!
LOBULAR BREAST CANCER
Lobular Breast Cancer Alliance
Patients, researchers and clinicians…
increasing our knowledge of lobular breast cancer
working together to advance diagnosis, treatment and follow-up care for patients
CENTERS OF EXCELLENCE FOR HDGC SYNDROME
Establishing a center of excellence for hereditary diffuse gastric cancer syndrome (2019)
“While no set of standards exist to identify centers of excellence for the treatment and study of patients with HDGC syndrome, the elements described herein can serve as a model for comprehensive, quality care.”
This topic is likely to be raised in March 2019 at the IGCLC workshop to update the HDGC Clinical Guidelines.
Here is a list of some of the medical centers known to have some level of multidisciplinary teams with HDGC expertise.
- Addenbrooke’s Hospital, Cambridge UK Contact Susan Richardson
- Massachusetts General Hospital, Boston MA
- MD Anderson, Houston TX
- Memorial Sloan Kettering Cancer Center, New York NY
- Moffitt Cancer Center, Tampa FL
- National Cancer Institute, NIH, Bethesda MD Contact NIH Foregut Team
- Stanford University, Palo Alto CA
- UChicago Medicine, Chicago IL
- Kaitlyn Kelly MD MAS, University of Wisconsin Madison, Associate Professor, Division of Surgical Oncology
SOCIAL MEDIA
CDH1 Mutation Gene
Support for all those who carry the CDH1 gene and there family,s. Sharing your experiences with others. Letting others no how you cope without a stomach. Everyone is different. One day at a time.
CDH1 Mutation with no known family history of Gastric Cancer
This page was created to support one another and keep each other abreast of new developments in our health and testing as well as new research as it becomes available.
CDH1 Mastectomy
This group is intended for anyone with the CDH1 mutation that has had or is looking to have a mastectomy. We have found that other mastectomy pages can be very daunting and intimidating. Being a part of the CDH1 community, in other forms, has been very uplifting and we are thankful for the group we are a part of. We would like to extend that into the mastectomy portion of the CDH1 mutation.Feel free to comment and ask questions. We like to be an open book here and encouraging to each other while on this journey we ALL never expected to be on!