Thursday, October 1, 2015

Your Online Health - social media & storytelling workshop

International Gaucher Day 2015 'Rare But Not Alone', initiated by the European Gaucher Alliance, is celebrated on Thursday 1st October, 2015. The National Gaucher Foundation, Inc., in the United States, organizes Gaucher Awareness Month every October. This year, the National Gaucher Foundation of Canada is also holding their National Patient Conference in Ottawa on October 17th - 18th. The theme this year is 'Gaucher Disease: Evolving Landscapes' and will include a special workshop session from the My Normal project on social media and storytelling.

NGF Canada Workshop Description:
Your Online Health: social media for information, support & advocacy 
Presented by Emma Rooney

We are strongly advised to not trust the Internet when it comes to our health, but the truth is, most of us are already accessing a large amount of health information online. The more pertinent question, what are YOU using it for and how are you managing your online health?
This workshop will be a chance to share your favorite online resources, to get practical tips for evaluating the validity of information you find, and to examine considerations around protecting your privacy. Find-out where to go for the latest Gaucher news, information, and personal stories. We’ll explore the online world of medical journals, patient registries, bloggers and writers, patient support communities, and even health apps that are currently popular.
We’ll reflect on how various social media channels are changing education, advocacy, and fundraising for the global rare disease community. Exciting online initiatives from Canada and beyond will be showcased, along with the Global Genes storytelling and social media toolkits. Don’t miss your chance to stay up-to-date with the online landscape. Leave this session better equipped to participate and take advantage for your health.  

Videos and other resources shared during this session can be viewed here:

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