March 1, 2021

This Rare Disease Day, and in honor of Brain Awareness Month, HESA and AE Alliance have come together, to kick off our #AskMeAboutAE campaign, visualizing the consequences of autoimmune encephalitis.

No one understands the daily struggles like you and your caregivers. You experience the consequences of AE every day. It is important to talk about what you are struggling with and/or continue to struggle with. Knowing which outcomes are negatively impacting your quality of life, will give doctors, researchers and pharmaceutical companies, a better understanding of AE as a whole. And it can be used to drive research and drug development forward in a patient centered way.

That is why, we are asking you to give a face to outcomes after AE. 

It is a simple as 1, 2, 3!

  1. Follow this link and print the brain picture;
  2. Write on it what you are struggling with most;
  3. Take a selfie of you holding this picture, post to your social media using the hashtag #AskMeAboutAE, and let us know if you are a patient or a caregiver.

We invite both patients and caregivers to participate. HESA and AE Alliance are hosting the Building Bridges symposium on Saturday April 10th. This symposium is for physicians and medical students and focusses on the importance of a multidisciplinary approach for AE. We will share your selfies and struggles with the doctors attending, so they can see and understand how AE impacts your life.

Watch this how-to video with Maddy (Vice-President HESA) to get started!

If you post your photo to social media, you give us permission to use it for promotional and educational purposes.