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#HEAwareness
"I believe you." 

Second Annual #Dazzle4Rare and First #HEAwareness Day

During the week of August 13th through the 20th, HESA is going to #Dazzle4Rare – AGAIN. We encourage all our social media followers and our #HEFamily to post, like, share, and otherwise spread awareness for rare disease. Again this year, we will be compiling a list of other communities who wish to participate and who will be providing information which you can share across social media platforms during the aforementioned week.

Why did we start this campaign last year?

It’s projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With 10% of the population suffering from between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.

For those wondering, why are we doing this, the answer is simple.

With 10% of the population living with rare disease and potentially 7,000 rare diseases out there, it’s so hard for all of us to reach the 90% who do not live with a rare disease and especially the condition(s) we have. If we band together and show the world we are here and have a voice while sharing each other’s stories, we have an opportunity to raise a greater awareness. What do we have to lose by creating a wider, more inclusive  community for one week and spread awareness together and for each other?

We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.

What’s not to love about that?

How Can You Get Involved?

If you would like to participate, it’s simple! You can like, share, and retweet any of the posts on our social media pages or those of our partners, Glitter Queens GlobalGYNCSM, and Mark2Cure. We also encourage you to share information about rare disease, your own story, or educational links and information for everyone to learn more – all using the hashtag #Dazzle4Rare.

Tag your selfies. Tell your rare disease story. Share someone else’s rare disease story. Raise awareness.

And if this was not enough, we also joined The Cambria Lord Foundation this year in their #wear4rare365 campaign. Our #wear4rare365 awareness day is August 18th, 2017. We encourage all our #HEFamily to wear their #HEAwareness t-shirts on this special day and share across social media to show that we are here and we are survivors!

If you have any questions, please don’t hesitate to contact us via our Facebook page, HESA – Hashimoto’s Encephalopathy SREAT Alliance. Alternatively, you can use your online contact form here.

Join us in saying, “I shine a dazzling light, showing others what is possible through advocacy and education. Please join me on social media the week of August 13th – 20th 2017 using the hashtag #dazzle4rare.

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AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.


The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."


Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."


Mark2Cure
Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"Alone we are rare. Together we are strong.®"


Contact a Family
"For families with disabled children."


Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.


NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.


HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.