U.S. Grassroots Campaign Raises Crucial Rare Disease Awareness Worldwide

    CHICAGO, IL, August 13, 2018 /24-7PressRelease/ -- Grassroots community group Dazzle4Rare with the support of organizations the Hashimoto's Encephalopathy SREAT Alliance, Glitter Queens Global, Mark2Cure, and PTEN Hamartoma Tumor Syndrome Foundation, have partnered with patient advocates on four continents to raise widespread awareness by promoting cross-community rare disease awareness via social media platforms the week of August 12th through the 18th.

This social media campaign, titled #Dazzle4Rare, launched on August 12th with a crowd-speak campaign reaching 126,851 people across social media platforms Facebook, Twitter, and Tumbler. This message kicks off a full week of cross-community messages and education with participants from diverse rare disease communities. Participants are encouraged to follow the Facebook event page where sharable messages will be posted or to follow the hashtag #dazzle4rare on social media platforms where users can like and share posts or tag their own rare disease stories and message of hope for others to see using the campaign hashtag.

The campaign is vitally important to helping communities, large and small, reach those they would not otherwise reach. It is projected that 1 in 10 Americans suffer from one or more of 7,000 rare diseases and approximately 50% of these people are children. This grassroots campaign aims to increase the social reach for the estimated 350 million people worldwide who live with a rare disease as a part of their daily life.

Our co-hosts this year are Gastroparesis: Fighting for Change who seek to unite those with gastroparesis and other digestive/motility disorders to work for change and Glitter Queens Global, a nonprofit organization with a mission to advocate through philanthropy. We welcome ANE International, a volunteer-based group for Acute Necrotizing Encephalopathy, as well Free Derya, Mental Health and Invisible Illness Resources, Savvy Cooperative, The Anti-NMDA Receptor Encephalitis Foundation, Inc., Rare Disease Connection, and new edition, MyGene2.org, a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. These courageous organizations, advocates, and patients will cross-promote rare disease education and advocacy on social media this week.

#Dazzle4Rare is also extremely excited to welcome back Mark2Cure this year. Mark2Cure is a citizen science project stemming from Andrew Su's lab at the Scripps Research Institute, a private, non-profit research organization engaged in basic biomedical science. Mark2Cure enables anyone who can read to assist in organizing biomedical knowledge in order to find clues which can accelerate the search for a cure. Mark2Cure is currently partnered with NGLY1.org to organize biomedical literature surrounding NGLY1-deficiency; however, the contributions from members of rare disease communities like Hashimoto's Encephalopathy, KCNB1, Cystic Fibrosis, and more still influence the project and inspire passion and support for this amazing community.

To join the #Dazzle4Rare movement, visit our Facebook event page #Dazzle4Rare 2018 to like and share messages for rare disease communities.

The Hashimoto's Encephalopathy SREAT Alliance (HESA) is a 501(c)(3) nonprofit organization formed in 2012. It is HESA's mission to collect, archive, and share information regarding Hashimoto's Encephalopathy ("HE"), also known as Steroid-Responsive Encephalopathy Associated with Thyroiditis ("SREAT") or simply Autoimmune Encephalopathy ("AE") with the public and medical professionals. We share information relevant to HE/SREAT as well as updates on HESA's activities and our publications.

Other names used to describe HE/SREAT are nonvasculitic autoimmune meningoencephalitis ("NAIM"), and encephalopathy associated with autoimmune thyroid disease ("EAATD"). HESA takes no position on the most appropriate name for the disease.

The purposes of HESA are exclusively charitable, educational, and scientific. Our primary focus is to educate the public and physicians concerning Hashimoto's encephalopathy and associated diseases and disorders. We aim to educate the public concerning the need for increased funding for the detection, treatment, and ultimate cure of Hashimoto's encephalopathy and associated diseases and disorders. We hope to one day assist in finding a cure of Hashimoto's encephalopathy.

We foster, promote, support, develop, encourage, solicit, maintain, receive and accept funds, and raise funds for and on behalf of such purposes. We fully appreciate all tax-deductible donations which enable us to continue to educate and raise crucial awareness of this poorly understood condition.

Nothing contained in our book or on our website is intended to be used as medical advice. No content is 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 professional's advice.

Although HESA provides a great deal of information about HE/SREAT, all content is provided for informational purposes only. HESA cannot provide medical advice. All information is provided for personal use and research without warranty.

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