State organizations can advocate for:
- State and federal legislation
- Community coordination
- Rare disesase awareness/education
In some states, rare disease advocates have joined together to unite rare disease community stakeholders to increase awareness and impact state policy. The state in which you live dictates the type and quality of care you receive, and the access to resources you have. State community action has the potential to improve access to diagnostics and treatments for the rare disease community locally.
Where Do I Start? Here are impactful ways to take action!
Collaboration Brings Innovation
Collaborate with other advocates and organizations to engage on policy issues and to host events by bringing multiple people together with the same mission.
Collaboration can help accomplish goals and grow the organization across the state.
Identify State Needs
Determine the needs of the state’s rare disease population through surveys, group meetings, and phone calls with different community members.
Event Planning
Advocacy events can range from informal meet-ups to state wide conferences. Make sure all events are tailored to your state’s rare disease community.
Audience Selection
Identify the target audience the organization seeks to engage.
Online Presence/Brand
The organization can benefit greatly from a name, logo, website, and social media accounts.
Maintaining an active social media presence is a convenient and accessible way to connect with the state’s rare disease population.
