KARES Foundation

?? MARCH 18 | 11 AM ET | LIVE on Zoom ? ?? KDM5C Community – We Need YOU! Have you heard about the RARE-X Data Collection Program? Whether you’ve never enrolled, aren’t sure if you did, or just need a refresher, this session is for you! ?? Why does it matter? By sharing your data, you’re helping researchers worldwide better understand KDM5C and accelerate breakthroughs. And the best part? Your data stays in your control—you decide who accesses it and can update symptoms anytime. ?? Got questions? We’ve got answers! Join us for a LIVE Q&A with Melissa McNeilly & Heather Cofer to learn more. ?? Register now: https://lnkd.in/esWtSx9T Let’s make sure EVERYONE is counted in the KDM5C Data Collection Program! ??

?? Today is Rare Disease Day—the rarest day of them all! Today is a day to celebrate our strength, resilience, and unity as we raise awareness for over 300 million people worldwide living with a rare disease. Thank you so much to the KARES family for raising awareness for KDM5C as we make a difference each day. Don’t forget to rep your Rare Disease sweatshirts in honor of the rare disease community (and don't forget to tag us)! Together, we shine a light on rare diseases and support those who need it most.??????

?? Rare Disease Day is just 4 days away! ?? This February 28—the rarest day of them all—let’s stand together to support the 300 million people worldwide living with a rare disease. ???? Every voice, every action makes a difference! Wear your purple and green to spread KDM5C awareness!

? One week to go! Rare Disease Day is on February 28—a day to raise awareness and show support for the 300 million people living with a rare disease worldwide. ???? Let’s make an impact together!

Meet the Speakers for the upcoming Virtual Research Symposium on March 1, 2025! ?? If you haven’t already, secure your spot now to get the latest information about KDM5C genetic variants. Join our community committed to promoting awareness of KDM5C-related variants and enhancing support for individuals affected by KDM5C Variants. ??? We can’t wait to see you there! Register today at our ??LINK IN BIO?? or bit.ly/3W9UAW1

?? We're just 12 days away from Rare Disease Day on February 28! Join us in raising awareness and showing support for the rare disease community. Every voice matters! ?? Don't forget to show support by wearing your purple and green!

Don’t forget to register for our next Family Education Series on Understanding Pathological Demand Avoidance (PDA) in Neurodivergent Youth! This meeting will be featuring Dr. Alex Klein, PsyD, a licensed clinical psychologist who specializes in parenting as well as assessing neurodivergent adults and children. This is a Zoom event that will take place on Tuesday, February 18 at 4pm PST / 7pm EST. Register now at: https://lnkd.in/e8zagN4H

?? 18 days to go - Rare Disease Day is coming up on February 28! ?? Show your support for over 300 million people worldwide living with a rare disease. Share, educate, and stand in solidarity! Wear your RARE sweatshirt to our virtual research symposium on March 1 to celebrate Rare Disease Day with us! ????

Last chance! Only TWO days left to pre-order your limited edition RARE sweatshirt! ?? Rare Disease Day is a chance to show your support and raise awareness for rare diseases worldwide, like KDM5C ?? All proceeds go to support the KARES Foundation. Don’t forget to order yours today! Order now! https://lnkd.in/e3tYih_C #ShareYourColors #ShowYourStripes

Want to share your KDM5C journey? We love celebrating our KDM5C families in the Family Spotlight and would be thrilled to feature your story! Click the link below to complete the questionnaire and be part of something special: https://lnkd.in/dnZHqkwe