
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