KIF1A.ORG

2025 KAND Conference Presentations & Slides Now Available!

Conference recordings and presentation materials can now be accessed through our website or YouTube channel. Don’t miss the Highlight Video featured at the top of the page—a chance to relive the inspiring moments of our unforgettable weekend together.

For any questions, please contact us at impact@kif1a.org

kif1a.org/2025-kand-conf…

*Turn sound on*

✨2025 KAND Conference Highlight Video✨

We’re still buzzing from an incredible weekend together! 💙 Here’s a look at some of the unforgettable moments from the 2025 KAND Conference.

Full presentations will be released later today or tomorrow—so check our website to catch every inspiring session from our families, researchers, and clinicians. 🎥✨

kif1a.org

@StartGenetic is leading an important movement to educated the public about starting with genetic testing if concerning symptoms or developmental delay is detected. Genetic testing early in the process leads to earlier diagnosis, earlier intervention, and better outcomes.
Our community knows the benefits of a genetic diagnosis, and we need to help spread the word and encourage others to #startgenetic
Read our blog post for more details.
kif1a.org/blog/genetic-t…

@StartGenetic is leading a critical movement to educate the public about starting with genetic testing at the early signs of developmental delay or concerning symptoms. Our community knows the importance and life changing diagnosis that can come from genetic testing and we want to encourage everyone to support this campaign, share their posts, and spread the word about the first Genetic Testing Day, July 25th. You can also read our blog post for more details. kif1a.org/blog/genetic-t…

rarediseases.org/driving-policy…

💥Medicaid and Lifesaving Waiver Programs Are Under Threat

A new bill backed by Trump proposes massive cuts to Medicaid funding—putting essential care and services for millions of families, including ours, at risk.

✅Take 2 minutes to make your voice heard.

This simple tool lets you send a prewritten email to your senators urging them to protect Medicaid. You can also add a few sentences about how Medicaid has impacted your life or the life of people you know and love.

🙋‍♂️Your story matters. Your voice matters.

Alone we are rare. Together we are STRONG. 🧬