KNOW YOUR FAMILY HISTORY – KYFH

A family story can change a health story.

A rare diagnosis often raises questions about family, genetics, and health patterns. Our Know Your Family History (KYFH) initiative empowers families and professionals to better understand and use family health information to improve care, prevention, and communication.

Knowing your family’s health story can:

  • Identify genetic or hereditary conditions
  • Inform early screening and prevention strategies
  • Empower personal healthcare decisions
  • Improve communication with providers
  • Strengthen family bonds and health literacy

The Role of Family Health History in Rare Diseases

For families impacted by rare diseases, documenting health history is especially powerful. It can lead to:

  • More accurate and timely diagnoses
  • Early interventions based on inherited risk
  • Improved care coordination, especially in underserved communities
  • Better understanding of health equity challenges in communities of color and historically excluded populations

Breaking Barriers Together

We recognize that cultural stigma, limited access to records, and communication gaps often make conversations about family health difficult. KYFH is about creating safe, intentional spaces to share:

  • Health conditions that run in the family
  • How diagnoses have impacted family dynamics
  • Gaps in knowledge or records — and how to bridge them
  • Tools and language to start the conversation confidently

Learning Opportunities for Families & Professionals

Through KYFH, we offer tailored resources and education for both audiences:

For Families

  • Guides and templates to build your family health tree
  • Workshops on how to talk about health history with loved ones
  • Tips for preparing family health information for medical visits

For Professionals

  • Training modules on culturally sensitive approaches to family health conversations
  • Continuing education on genetics, family history, and health equity in rare disease care
  • Tools to integrate family history into patient-centered care

Featured Conversations

🎥 Why Knowing Your Family History Matters: Courtesy of Global Genes and the Rare Disease Diversity Coalition (RDDC).

🎙️ Family Talks: From Generations to Genes with Maria Della Rocca, Global Genes & Molly Martzke, National Genetics Education and Family Support Center.

🎙️ Family Talks: Real Stories, Real Families with Kareem Edwards, E.WE Foundation & Heather Gjesvold, Advocate.

October is National Family History Month

This is the perfect time to begin the conversation with your loved ones. Ask questions. Take notes. Build a family health tree.

Start the Conversation:

  • “Has anyone in our family had a rare or chronic illness?”
  • “Do we know if certain conditions run on mom’s or dad’s side?”
  • “Has anyone had genetic testing?”

We’re here to help families document, understand, and share their health stories.

✅ Download our Family Health History Guide (available October 2025)
✅ Attend a KYFH Workshop or Training
✅ Join the movement on social media: #KnowYourFamilyHistory #KYFH