[ The ROAR #8 ] 2025 March Updates

The latest episode of [ The Roar ] is here!

This episode, we’re diving into:

🩵💜🩷 A huge thank you to our community for your incredible Rare Disease Day advocacy—your voices matter!

🔬 [1:00] Research updates - what’s happening behind the scenes on CASK gene research

🎨 [5:15] The Ultra Rare Collection fundraiser – Join us, share and follow

@ultrararecollection

⚖️ [7:35] Federal budget cuts & advocacy for Medicaid – Sharing our stories to help build understanding of the importance of Medicaid, the Everylife Foundation for Rare Diseases, and Project CASK-funded research is still moving forward!

+ Medicaid and Federal Funding take action with Everylife Foundation:

https://everylifefoundation.org/rare-advocates/take-action/

+ Sign up for Citizen Health + Project CASK:

https://www.citizen.health/partners/project-cask

+ Create your personalized Liocorn Donation page:

https://givebutter.com/Liocorn/join

+ Register with Project CASK:

https://www.projectcask.org/register