What is Advocacy?

Advocacy = Telling your story!

Advocacy is all about raising awareness, sharing your unique AE journey, creating an impact, inspiring action, and changing lives.

Most people have not heard of AE and don’t know anything about its devastating impact on you and your family. Many health care professionals are also unfamiliar with AE, explaining why you may have to see many physicians before you get a proper diagnosis. Since the discovery of the NMDAR antibody by Dr. Dalmau in 2007, we have seen an increase in scientific publications and studies. But still, our knowledge of AE, its causes, and its treatment stands in stark contrast to what we know about other diseases like multiple sclerosis. There are few AE clinical trials to participate in, limited research funding available, and currently, no FDA approved treatment for AE.

You can shed light on symptoms, treatments, and outcomes and educate others by telling your story. We need people to be familiar with AE to understand its rarity, impact, and complexity. We need to make it personal. A lot of good can come from sharing your story – it makes you feel less isolated and can change AE’s course. Like all rare diseases, it’s all in the numbers. The more people share their stories, the greater the impact.

AE Alliance launched their Advocacy Program AE on the Hill in October 2020. The focus points for 2021 include:
– Increase knowledge and awareness of AE
– Increase funding for AE medical research

Workshop – How to tell your AE story, effectively.

How Can I Advocate?

Advocacy comes in all shapes and sizes. You pick the one that best suits your personality and abilities. Join AE on the Hill and:

  • Share your story on our website and on social media
  • Become a Support Group Member
  • Host an AE informational session
  • Participate in Rare Across America on behalf of AE patients
  • Join AE Alliance for Rare Disease Week on Capitol Hill
  • Talk to your local, state, and federal representatives

Ready to Join AE on the Hill and be an AE Advocate?

Yes, I would like to be an AE Advocate

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If you have any questions, email us at advocacy@aealliance.org


Talking to Your Local and Federal Representatives

AE Alliance partners with leading organizations in the Rare Advocacy field (EveryLife Foundation, Global Genes, and NORD). These organizations have developed the necessary infrastructure, experience, and expertise to get us in front of your legislative representatives.