It is all about raising AE awareness
February 20, 2021
Only a few more days till World Encephalitis Day! WED is a great day to raise awareness for AE. Take a photo of yourself wearing RED and post it to your social media with the #RED4WED on Monday, February 22nd.
WED is also a great starting point for raising AE awareness all year round. Raising awareness is especially important when dealing with a rare and debilitating disease. Symptoms of AE may resemble those of more common conditions, which often lead to a significant delay in getting the correct diagnosis. Doctors may not be aware of AE or have never treated patients with AE. And even after obtaining a diagnosis, treatment options can be limited, tend to be more generic, and are often very expensive. Not to mention the struggle of getting your treatments approved by insurance companies. The outcomes after AE are poorly understood, and the necessary therapies needed in your recovery journey are not accessible to all.
By raising awareness of AE, we can improve early diagnosis, encourage policymakers to increase access to care and services, fund research into AE, and reduce feelings of isolation faced by AE patients and their families. Patients and caregivers can also directly contribute to research by reporting outcomes, engaging in planning studies, and raising funds.
Raising awareness takes time and energy, and there are different ways to go about it. Here are some examples:
– Share your story on social media and our AEA website;
– Get your story in your local newspaper or on your local TV station;
– Host an AE informational session;
– Join AE Alliance for Rare Disease Week on Capitol Hill;
– Join the AE on the Hill squad and talk to your local, state, and federal representatives;
– Have your Governor declare February 22nd as
If you have questions, want to help, or need help raising awareness, contact us at info@aealliance.org. Together, we can change the trajectory of AE!
