Love Someone with AE?
Help Support Our MissionHow IAES has made a difference
Do you love someone with Autoimmune Encephalitis?
Donate today to express your love and support of them.
The International Autoimmune Encephalitis Society is the only Family/Patient centered organization for people with a diagnosis of Autoimmune Encephalitis. The services we provide are all inclusive from getting a diagnosis to recovery and the many challenges experienced in that journey.
Services provided include assisting with insurance issues or getting insurance coverage, assisting with over turning insurance denials for life saving treatment, (for members in the U.S.A.), crisis advocacy, directing patients to experts for confirmation of an accurate diagnosis. We connect families with free air travel and discounted stays near several major medical centers.
Additionally, IAES helps families and patients understand the disease and the treatments involved so they can become strong advocates/self-advocates and have more productive doctor appointments. Receiving an accurate diagnosis and appropriate treatment for best outcomes is the key component.
"When I received a hospital bill for $47,000 that my insurance company refused to pay I turned to International Autoimmune Encephalitis Society for help.
They place a complaint with the Hospital that they were in non-compliance with Federal statutes requiring that Nonprofit Hospitals not profit. As weeks passed, IAES went up the ladder and filed a complaint with the State of California Health and Human Services for noncompliance with Federal statutes.
Next, IAES notified the Chief Financial Officer of the hospital that an IRS complaint would be filed requesting nonprofit status be revoked and they would be made to pay taxes now as if they were a profitable enterprise.
The very next day, IAES called me to let me know that they had received a phone call from the Chief Financial Officer for the hospital. He was very sorry! The hospital was waiving my entire hospital bill of $47,000!! Without the help I received from IAES, my family would have had to refinance our home. We are forever grateful.”
Kelly McCabe
Katherine Crow
"I was able to get a free flight to an expert physician and a discounted accommodation
during the 5 days it took to undergo intense testing at an AE Center several states away from my home. I was diagnosis with AE. I had been misdiagnosed before and felt hopeless until I reached out to IAES.”
Jeff
"The best and most reliable source of up-to-date information about autoimmune encephalitis
And also the only organization genuinely connecting AE-patients around the world. Without IAES it would have been a lot harder for me to understand my disease (Hashimoto’s encephalitis/encephalopathy) and recover back to normal life. Excellent volunteering
Mari E. Kiuru
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Katherine Crow
"Now, I go to doctors and get my medications at no cost. I have a wonderful nurse who takes care of everything including rides to appointments if I need it.
I appreciate everything IAES did to help me get the care I need. I can’t thank you enough!”
Katherine Crow
"IAES LEAD ME TO A WIN OVER MEDICAID REFUSING MY RITUXAN TREATMENT.
This organization did the heavy work with letters to HHS, calls, and anything I needed to help save my life. I am truly grateful and in awe that the power of strangers can change a life. Without their oversight I would have still been a number who was not taken as seriously. This has been a GIANT win. Love You IAES!”
Jady Davis
IAES recently walked us through an insurance appeal when our daughter's insurance denied her life saving treatment! Within 48 hours
‘I had all I needed in hand to appeal and win! This treatment was vital to our daughter’s care and the IAES has been a huge resource and support in helping us advocate for her.
Devon Frakes
International Autoimmune Encephalitis Society is proud to be a Platinum Level Participant on the GuideStar Exchange, demonstrating our commitment to financial transparency. IAES is a charitable non-profit 501(c)(3) organization. Tax ID# 81-3752344 Donations raised directly supports patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world.
Financial statement will be made available upon request.
