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


You can make an impact on the present and the future health and well-being of HDGC patients and families worldwide.

Speak up! Share your questions, thoughts and concerns. Do you have the resources and information that you need? What are your pressing concerns? What are the greatest challenges that you face? What have you learned that every patient and family should know, or that medical care providers must understand? Your voice can be heard.

Some topics, questions and concerns can be addressed on this website. Some matters will be appropriate for attention at the global IGCLC HDGC Clinical Guideline update meeting. Once again I will be a participant in the IGCLC workshop in New Zealand in March 2019 to update the 2015 HDGC Clinical Guidelines. It is always helpful to hear from HDGC patients and families.

Perhaps your voice will impact updates in the HDGC Clinical Guideline. Perhaps your voice will impact the future direction of HDGC research.

Either way . . .

Make Your Voice Heard!

All messages will be acknowledged with a personal response within 72 hours of receipt.

Hear My Voice

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