National Advocacy

AEA Family and Friends,

We are excited to take our first formal steps in national advocacy on behalf of the AE community.

The Alliance has recently joined the EveryLife Foundation for Rare Disease Community Congress, a membership-based strategic advisory council dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together to advocate for rare disease patients.

Currently, the Community Congress will focus on four working groups aligned around public policy, regulatory process, newborn screening, and access to approved therapies.  The Alliance will focus its efforts on public policy.

We are also actively engaged in the Rare Disease Legislative Advocates (RDLA) program, Rare Across America. This month the Alliance is meeting with various members of congress in an organized effort of the rare disease community to advocate on behalf of all rare diseases, with our efforts specifically highlighting the special challenges facing our autoimmune encephalitis patient community, in particular.  We will be actively pursuing legislative support for policies that benefit you and your loved ones.

 

Look for more information about our national advocacy efforts soon!

Caterri Woodrum

CEO/Executive Director AE Alliance