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. Others may be best served with a telephone conversation. Often your issues and concerns are appropriate for attention at global IGCLC HDGC Clinical Guideline workshops. It is always helpful to hear directly from HDGC patients and families about your experiences and concerns.

Perhaps your voice will impact the next update of the HDGC Clinical Guidelines. 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.

Hear My Voice

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