Visitor Survey
- Patient Advocate, Beverly Seminara Help FAQ and advocacy website by Beverly Seminara
- Hashimoto's Encephalopathy – A Complete List of Published Case Studies This page may no longer be updated. Review at your own discretion.
- HE Notebook A research site and blog specifically dedicated to Hashimoto’s Encephalopathy.
- Neurology.org Neurology – The most widely read and highly cited peer-reviewed neurology journal
- Children with hashimoto's Encephalopathy For parents, guardians, care-givers, and children with Hashimoto’s Encephalopathy.
- Children with Hashimoto's Encephalopathy Health/Wellness Website Another H.E./SREAT group geared toward parents, guardians, caregivers, and children with the disease.
- For Those Diagnosed with Hashimotos Encephalopathy / SREAT For those diagnosed with H.E./SREAT.
- Hashimoto's Encephalopathy Group Description – “You can post anything to do with this disorder.”
- HELPS Hashimotos Encephalopathy Group
- supporting those with hashimoto's encephalopathy Community Group Description: “H.E is a disorder NOT a disease! It is not cureable and not many people understand it. We are here for you so don’t suffer in silence.”
- The Understanding Hashimoto's Encephalopathy – Support Forum The support forum associated with the book “Understanding Hashimoto’s Encephalopathy”
- Laugh Out Lyme “Sometimes laughing is the last thing you want to do when you deal with chronic illness, but once you let out a little giggle and then a couple more, you can’t help but feel uplifted, even if only for a second.” -Mary Sira
- American Brain Foundation
- Aphasia Hope Aphasia is a speech/language disorder that impairs a person’s ability to communicate. It is most commonly the result of a stroke but can occur from any severe head injury.
- Auto-Immune Encephalitis Alliance Promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.
- Autoimmune Walk Walks to raise money for auto-immune disease awareness
- Care to the People Care To The People™ is a for-purpose, social media health initiative that’s making the web a better place for anyone coping with a health issue, their loved ones, and patients seeking advice, inspiration, and encouragement from others.
- Encephalitis Society
- HESA Hashimoto’s Encephalopathy SREAT Alliance
- HESA – Hashimoto's Encephalopathy SREAT Alliance Non-Profit Organization Information about H.E./SREAT and resources.
- IG Living Our mission is to support the IG community through education, communication and advocacy.
- Invisible Illness Week September 28th – October 4th Invisible Illness Awareness Week
- Mark2Cure Project Push research forward and discover cures faster.
- Neurology Now Neurological jounal
- Rare Disease Day Rare Disease Day
Rare Disease Day Video Project
I am seeking to help as many rare disease communities as possible share a message about how important rare disease research is to them. I am encouraging rare disease patients, family, and loved ones (even clinicians) to share a 30 to 60 second clip of what rare disease research means to them.
If you wish to record more information, you can also use the below “script” but it’s not necessary. It would be great if you would say, “Share rare awareness today. This message you share today may save a life. I dazzle for rare.“
To record a message from your smart phone, tablet, or other computer, click the “record” button at the bottom of this page. You may be asked to allow access to your smart phone, tablet, or web cam – please select “yes.”
Record and watch the video back BEFORE submitting, please. If you submit a video on accident, please use the form at the very bottom of this page.
“Hi, my name is ____.”
“I am ____ years old.”
You do not have to include your age if you do not wish to do so.
“I was diagnosed with ___ ___ years/months/weeks ago.”
“When my symptoms first began, …”
Talk about the onset of your symptoms, events that may have triggered symptoms, or the moment you knew something was really wrong such as a trip to the ER, etc.
“On a daily basis, I experience …”
Talk about a typical day (if there is such a thing).
Also talk about the emotions you feel and the way other perceive you and how that affects you as well.
“This disease has affected my ability to …”
Talk about effects disease has had on your quality of life, family, and friends.
“The scariest thing/incident/symptom of this disease, for me, has been …”
Talk about an incident, symptom, or other that has been the hardest or frightened you the most.
After finishing the questions and answers, please ask the viewer to “share” this video to help raise awareness.
To record a video from this page, click “Rec” below.
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This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.