Advocacy has officially earned its own space on the site. ✨
If you head to the menu at the top of the homepage, you’ll now find a brand-new tab titled “Legislation” ( the second tab in the page menu).
This section was created to help make healthcare and rare disease legislation easier to understand, easier to follow, and easier to act on.
Each piece of legislation listed on the page will include:
• A brief breakdown of what the bill is
• Why it matters to patients and caregivers
• Who it could impact
• A short, bite-sized video where I explain the legislation in plain, everyday language so it feels less overwhelming and more accessible
My goal is simple: make advocacy feel approachable. Because patients and caregivers deserve to understand the policies that directly impact their lives.
For now, we’re currently focusing on:
• The Safe Step Act
• The Credit for Caring Act
• The Medical Foods and Formulas Act
As I learn about additional legislation relevant to the rare disease and chronic illness communities, I’ll continue updating the page regularly!
And if you know of bipartisan legislation that could positively impact rare disease patients, disabled individuals, caregivers, or those living with chronic health conditions, please feel free to send it my way. I’d love to continue growing this resource collaboratively. 💛
You can explore the new page here: Legislation.
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