About Our Efforts
Advocating in Congress
The legislative branch is made up of House and Senate, known collectively as Congress. They are responsible for writing and passing legislation, including federal spending. We're working to make Angelman syndrome a priority on Capitol Hill.
Why Congress?
- Congress holds a key power called “power of the purse” – they oversee allocating and spending your tax dollars. Because of this it is crucial we work to ensure.
- Congress sets funding priorities and direction for all federal agencies that impact AS. Our goal is to create champions for AS on the hill in order to influence that funding and direction.
Why Your Advocacy Matters
- Patient advocates play a crucial role by sharing their voices and personal stories, forming meaningful connections that influence congressional priorities.
- Congress, driven by constituent demands, responds more effectively to issues when they hear from advocates directly, especially through face-to-face interactions.
- Effective patient advocacy leads to concrete congressional action, such as supporting legislation and policies focused on rare diseases and increased federal attention and funding for affected communities.
1
Advocates
- Your voices
- Your stories
- Making powerful and lasting connections
2
Congress
- Driven by constituent demands
- Must set priorities
- Face-to-face interactions go a long way
3
Action
- Support for legislation & policy that impact our community
- Rare disease legislation and policies (FDA)
- Federal focus and spending on AS and rare disease
Advocacy Goals for Congress
- Increase the federal focus and funding for funding of Angelman syndrome.
- Support, lead, or monitor legislation related to improving rare disease drug development.
- Support, lead, or monitor legislation aimed at improving services and support for caregivers and disability policy.
- Create relationships that lead to Champions for AS in Congress.
Join Us Every March for Our Annual Congressional Advocacy Day in Washington, DC
Parents of individuals living with Angelman syndrome, as well as grandparents, aunts, uncles, siblings, and friends. We also welcome clinicians and researchers – Anyone can be a good advocate!