International Rare Disease Awareness Campaign August 13th Through the 20st
CHICAGO, IL, August 16, 2017 /24-7PressRelease/ — The Hashimoto’s Encephalopathy SREAT Alliance (HESA) has partnered with rare disease organizations, patients, and Mark2Cure with the goal of raising a wider awareness of rare disease by cross promoting the messages of these communities via social media platforms.
It is projected that 1 in 10 people suffer from a rare disease https://globalgenes.org/rare-diseases-facts-statistics/. At this time, there are thought to be at least six to seven thousand known rare diseases. With such a large number of conditions spread across 10% of the population, it is extremely difficult for one organization alone to reach a greater audience. This shared effort seeks to increase the social reach for many conditions that might otherwise not be realized.
This social campaign titled #Dazzle4Rare kicks off on the 13th of August and seeks to recruit social support from communities, advocates, patients, and supporters from around the world using social media platforms to share photos, stories, and information about rare diseases.
Advocates Glitter Queens Global www.theglitterqueen.com, Gynecologic Cancer Social Media (#GYNCSM) http://gyncsm.blogspot.com/, Monica Andrade, and Lisa Davis Budzinski of Central Pain Nerve Center [#CentralPainSyndrome] and the Mesothelioma and Asbestos Awareness Center have signed-on to cross promote rare disease education and advocacy. Again this year, parents and advocates, James and Samime Baldini, the parents of Amherst student, Derya Demirtas, are lending their support via their Facebook page #FreeDerya. https://www.facebook.com/freederya
The campaign has acquired the support of Mark2Cure, 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 https://www.scripps.edu/. 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.
If you can read, you can help. https://mark2cure.org
For a list of participants, please follow our Facebook event, #Dazzle4Rare 2017.
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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