Today is Rare Disease Day and the kick-off of our ‘Ask me about AE’ campaign.
Each year, Rare Disease Day takes place on the last day of February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Like no other, you know how autoimmune encephalitis affects patients and their families; the impact goes far beyond anyone can imagine. And that is why we need to get loud about AE. Talking about your experiences, the disease, the impact it has on your lives, will help raise awareness and help change lives.
On World Encephalitis Day we started to follow Andrew. Andrew, an AE survivor, will be running, biking and swimming 70.3 miles to raise AE Awareness. The back of his race shirt reads: ‘Ask me about AE’ and when we asked Andrew if we could use his phrase for a yearlong campaign, he immediately said yes.
‘Ask me about AE’ serves as an invitation for others to learn more about AE and learn about you. AE Alliance has designed a T-shirt that is meant to serve as a conversation starter, inviting people to ‘Ask you about AE’. Follow this link to buy one and start the conversation. Post your stories, photos and videos using the #AskMeAboutAE and let’s get loud!
We will be reaching out to you in the coming months asking for your help to reach your local psychiatrist, your state representative, and other important stakeholders.
Let’s talk about AE so more and more people will know about this disease. We can change and save lives! #AskMeAboutAE