meranelakel9Jan 162 minGet to Know CTNNB1 Connect and Cure (CCC)About CTNNB1 syndrome CTNNB1 syndrome is a rare neurodevelopmental disorder caused by variants in the CTNNB1 gene, located at 3p21. As of...
meranelakel9Nov 29, 20234 minGet to Know ASXL Rare Research Endowment (ARRE) FoundationAbout ASXL-related disorders ASXL-related disorders are ultra-rare neurodevelopmental disorders typically caused by a de novo change to...
Justin WanAug 4, 20222 minIntroducing the New REN Map (Where’s the Rare?)!The newly added REN Map. The Rare Epilepsy Network has created a new page for families and clinicians to use! With 80+ organizations...
Justin WanJul 21, 20222 minThings You Should Know About the Rare Epilepsies & Social WellnessThe month of July marks Social Wellness Month! Social Wellness Month is meant to highlight the positive effects of healthy relationships...