Understand your risk. Make informed decisions. Advocate for yourself. Support the 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.

GENETICS

CDH1 Gene
NIH, Genetics Home Reference

Know your family history
Know Your Genes
Genetic Disease Foundation

What is genetic discrimination?
NIH US National Library of Medicine
Genetics Home Reference

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

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 2018

An excellent guide for every HDGC patient to read, and a perfect introductory resource to share with every member of your medical team!

Post-Total Gastrectomy Eating & Nutrition Ideas
Discover tips and ideas from those who are living post-total gastrectomy.
Add your tips and ideas too!

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

KAREN CHELCUN SCHREIBER

I am happy help address your questions and concerns, and help connect you to additional information and resources.

We can communicate via eMail or arrange a time for a telephone or Skype call.

Find me on Facebook too.

Please . . . Make Your Voice Heard!

MEDICAL CENTERS WITH HDGC EXPERTISE

These are some of the medical centers known to have multidisciplinary teams with HDGC expertise.

  • Addenbrooke’s Hospital, Cambridge UK Contact Susan Richardson
  • Massachusetts General Hospital, Boston MA
  • Mayo Clinic, Rochester MN
  • 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
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!

Karen Chelcun Schreiber
Find me on Facebook too!

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