- Aug. 10, 2016
-- Rare disease non-profit, the Hashimoto's Encephalopathy SREAT Alliance (HESA), has partnered with advocacy groups, rare disease organizations, and Mark2Cure with the goal of raising a wider awareness of rare disease by cross promoting disease communities via social media platforms the week of August 15th through the 21st.
It is projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/
. 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, kicked off on August 4th with a Thunderclap campaign [https://www.thunderclap.it/
seeking to recruit just one hundred social media supporters across Facebook, Twitter, and Tumblr. The Thunderclap message leads up to a weeklong rare disease awareness cross-promotion with participants from diverse rare disease communities.
Fighting for a Cure [https://www.facebook.com/Gastroparesis.FightingForChange....
] and Gynecologic Cancer Social Media (#GYNCSM) [http://gyncsm.blogspot.com/
], based in the United States and Clots Matter [https://twitter.com/
, based in Canada have signed-on to cross promote rare disease education and advocacy across various social media platforms. Advocate, Monica Andrade, a CSF leak patient, has also joined the effort to spread awareness and share her personal story about CSF leak [http://www.csfleak.info]
. In addition, James and Samime Baldini, parents of Amherst student, Derya Demirtas, are lending their support and advocacy in autoimmune encephalitis. [https://www.facebook.com/
As the campaign picks up speed, we have 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]
We encourage you to tag your selfies, tell your rare disease story, and raise awareness. Let us dazzle the World and show everyone how rare can shine!
For a list of participants, please follow our Facebook event, #Dazzle4Rare [https://www.facebook.com/