Advocating for a rare disease

Thursday, July 26, 2018 from 2:00 – 3:00 p.m. EDT

Speakers: Angeles Herrera, Holly Bode,

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

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Speakers

Angeles Herrera

Angeles Herrera was born in Managua, Nicaragua and currently lives in San Francisco, California.  Angeles has suffered from kidney disease all her life.  She had acute kidney failure caused by lupus when she was 4 years old.  She lost her right kidney then.  Fortunately, her left kidney began to work six months after the acute failure.  Her health problems resurfaced in the early 2000s when she was diagnosed with Berger’s disease during a routine check-up.  After being on peritoneal dialysis, she was fortunate to receive a kidney transplant in 2007.  

Throughout her life, she has considered herself very blessed and takes whatever victories she can.  She uses her blessings to better the lives of those in her community and beyond.  She is very engaged in advocating for her end-stage renal disease (ESRD) peers. She assists the American Kidney Fund and other renal groups by sharing her story and raising awareness.

Angeles has a bachelor’s degree in science (Business Administration, 1993) from San Francisco State University. She is a leader in the environmental field, with more than 25 years of experience.

Holly Bode

Holly Bode is the Vice President of Government Affairs at the American Kidney Fund.  Before coming to AKF, she worked at the Alliance of Community Health Plans where she led their federal lobbying and communications efforts for nearly five years, with a focus on Medicare Advantage and other health plan issue. She also worked at Washington Council Ernst & Young, where she provided strategic political and policy counsel to a variety of health care and employer clients, as well as four years at UnitedHealth Group where she coordinated the federal affairs strategy for United’s Medicare and Medicaid products. Holly also worked on Capitol Hill for over nine years for various members of the U.S. Senate and House of Representatives, as well as five years at the Department of Health and Human Services under Secretary Donna Shalala.