Advocating for a rare disease
Becoming an advocate is empowering, and allows patients to affect change in their life and the lives of others. Advocating for a rare disease may be more challenging than advocating for more common illnesses, but it is not impossible. There are other patients out there fighting a similar battle every day.
Our speakers, Angeles Herrera, a patient advocate, and Holly Bode, a policy influencer and Vice President of Government Affairs at the American Kidney Fund, have years of experience fighting for patient rights. Ms. Herrera and Ms. Bode will team up to discuss:
- The importance of patient advocacy
- What it means to advocate for a rare disease vs. a more common disease
- How to become an advocate when you have a rare disease
- Advice on overcoming challenges to be an advocate when you have a rare disease