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FAQs

Got Questions? There is a good chance someone else does as well. Send them to ilene@epilepsiesactionnetwork.org and we will get back in touch. 

Really? Just One Voice?

We recognize we are a large, growing and diverse stakeholder community. There are many needs and we respect and support the activities being led by individual epilepsy organizations. To be clear - there is not just one ask or one voice.  However, for our entire community to secure authorization legislation to develop a National Plan for the epilepsies - we will be most successful if this is a unified effort with a clear, single ask supported by the broadest number of stakeholders.

Can I Offer Language to Help Get the Plan?

Government relations teams across the epilepsies are collaborating to craft the "ask" to Congress to authorize the development of a plan for the epilepsies. There is a successful formula for doing this which requires the expertise of our government relations colleagues to develop appropriate legislative language. Once we secure enough Congressional Champions to pass the legislation. then the Department of Health & Human Services will coordinate a meeting of epilepsy stakeholders to plan the plan. The planning of the plan will require input and guidance from our entire stakeholder community regarding priorities. This is where the vast expertise of the broad epilepsy stakeholder community will be required.  a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.

How Can We Prepare to Plan the Plan?  

Although we can’t predict how long it will take to get Congress to authorize the development of a plan, there are steps epilepsy stakeholders can take now so that once it is authorized our community is ready to actively engage. As you communicate with and organize your internal communities, please keep track of and relay to us what federal legislative policies would be most meaningful to your communities.  

When Will We Get the Plan? 

The timeline is unpredictable, especially in an election year. Flexibility, agility, and patience are key. This could happen fast or take many months or years! It took Parkinson’s 2 plus years and other disorders even longer. The key is to start the process now, continue to build the momentum, do our internal due diligence – so that once the opportunity to develop a plan is authorized, our community is organized and ready to participate! 

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