CDKL5 in Color

Rare Disease Week on Capitol Hill is happening February 24-26, 2025 in Washington D.C. Hosted by the Rare Disease Legislative Advocates (RDLA), a program of EveryLife Foundation for Rare Diseases , this multi-day event empowers participants to learn key policies affecting the rare disease community and share their stories with Members of Congress. Can't make it to D.C.? You can participate virtually! Here's the info: Feb 24 - Rare Reels Documentaries (watch on your own time!) Feb 25 - Legislative Conference Live Stream (9:00-5:00) Feb 26 - Rare Disease Congressional Congress Briefing (9:00-10:00) Link to participate: https://everylifefoundation.org/rare-advocates/rare-disease-week/rare-disease-week-attendee-corner-virtual-rare-disease-week Ready to take action? View the RDLA Action Alert Center for ways to make your voice heard: https://everylifefoundation.quorum.us/actioncenter/ We are grateful to the EveryLife Foundation for their rare disease advocacy leadership! You can...

    Advocacy doesn't come naturally for many of us, and yet it is an important skill to develop if your child lives with a rare disease like CDKL5 Deficiency Disorder. What is Rare Disease Advocacy? The goal of rare disease advocacy is to improve the lives of those living with rare diseases, irrespective of the unique disease state. Luckily, rare disease advocacy is well coordinated and strong in the United States. The leading advocacy organizations' efforts are bolstered by the support of smaller patient advocacy groups who sign on to letters of importance or take action when recruited. It's an easy way for smaller groups to engage in advocacy. Here are two leading rare advocacy organizations to know: National Organization for Rare Disorders (NORD) - You can join NORD's Rare Action Network and be connected with advocates in your home state, as well as be informed about important advocacy calls to action. Everylife Foundation - Their Rare Disease Legislative Advocate...