July 26, 2018, 1:00pm – 2:00pm EDT
Advocating for a rare disease
When you have a rare kidney disease, it may seem like you are the only one in the world fighting the battle. But that does not have to be the case. There are advocates all over the country who advocate on behalf of people with kidney disease, and even rare diseases.
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
