At DSF, we understand that keeping up with the quickly evolving changes happening right now can feel overwhelming as you try to determine what the impacts could be on your loved one with Dravet syndrome. We are committed to keeping our patient community informed about legislative actions affecting Medicaid and rare disease research, which are essential for maintaining access to care and driving advancements in treatment. We want to ensure you have the information and resources needed to advocate for your loved one effectively, and to tell you that you are not alone.
DSF is proud to partner with many nonpartisan organizations, including the EveryLife Foundation for Rare Diseases (which also leads the Rare Disease Legislative Advocates), the Alliance for Regenerative Medicine, and the American Brain Coalition, whose priorities are to educate and inform rare disease communities with unbiased information they need to advocate for their loved ones. With potential policy changes and budget cuts, your voice has never been more important. As we receive updates or learn of new advocacy opportunities, we will be keeping our community informed.
If you are not sure where to begin and want to learn more about how to advocate for our community, check out our most recent advocacy webinar. Here are some additional ways you can stay in the loop and help advocate:
- Bookmark and regularly visit our Legislative Advocacy page – this page will be regularly updated with information on current legislation and easy ways you can take action.
- Download the 5 Calls App – It provides topic-based scripts and connects you with your representatives on the topics that matter most to you.
- Sign up for DSF newsletters and emails – if you don’t already subscribe to our email list, sign up now so that you receive updates from us on policy shifts and funding changes. We will be sharing action alerts from our nonpartisan partners and easy ways for you to contact lawmakers about policies that affect Medicaid and funding for epilepsy or rare disease research .
- Stay Engaged on Social Media – be sure to follow DSF’s social media channels and other nonprofits and healthcare organizations to get real-time updates on key legislative actions.
- Follow other reliable sources – keep an eye out on updates from organizations like The ARC or the Epilepsy Foundation. These groups track policy changes and explain what they mean for patients, so you can better understand the impact on your family.
- Check government websites – such as the Centers for Medicare & Medicaid Services (CMS), Food & Drug Administration (FDA), National Institutes of Health (NIH), and Centers for Disease Control & Prevention (CDC) for updates on policies, funding, and research initiatives related to rare diseases.
- Connect with Your Representative and Senators – Knowing who represents you in Congress and following their stance on healthcare policies can help you stay ahead of potential changes. Many lawmakers share updates through newsletters and town halls. You can find and connect with your legislators at this link.
- Attend Webinars & Policy Briefings – DSF plans to offer virtual events as well as sharing webinars from other nonprofits and healthcare coalitions that will break down legislative developments and how they impact patients.
By staying informed and engaged, you can help ensure that Medicaid and rare disease research remain a priority. Even small actions, like reading a policy update, contacting your legislators, or sharing information with your extended community, can make a big difference! If you have any questions, please email our Patient Advocacy Director, Shannon Cloud.
