Every year Global Genes hosts a Week in RARE, which combines the RARE Health Equity Forum and RARE Advocacy Summit. This conference gathers and engage rare disease advocates and leaders in the same space for conversation. This year's conference was in Kansas City, MO. I had the privilege of volunteering at the CTNNB1 Connect & Cure booth, to share information about CTNNB1 syndrome with attendees. Also attending this year was Ashley Hamic. Ashley is a CTNNB1 mom, an advocate and founder of Wish Wear Accessories. She agreed to come on the podcast to tell us about her experience and the most impactful sessions she attended. We hope you will enjoy hearing about her time at Week in Rare.https://www.curectnnb1.org/#raredisease#syndrome

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