Sunday, October 18th, 2015
OTTAWA
“The most exciting innovation in healthcare today is people talking with one another...it's really, not necessarily, access to information that's going to make the difference in the coming decade but access to each other." -Susannah Fox, Associate Director, PEW Research Centre, Washington DC. World Class Healthcare Driven by Patient Power
A complete list of resources highlighted during the Your Online Health: social media for information, support & advocacy workshop, held at The National Gaucher Foundation of Canada, Gaucher Disease, Evolving Landscapes, conference:
GaucherCanada YouTube video playlist for workshop:
Storytelling
My Normal Resource List: http://www.mynormal.ca/p/links.html10 Ideas for Getting Started on Your Story, My Normal:
http://www.mynormal.ca/p/10-storytelling-starters.html
Global Genes Rare Toolkits: www.globalgenes.org/toolkits
Using Storytelling to Raise Awareness for Your Rare Disease (Rare Toolkit): https://globalgenes.org/toolkits/storytelling-2/why/
Resource Guide:
https://globalgenes.org/toolkits/storytelling-2/resource-guide/
A Curious Mind: The Secret to a Bigger Life by Brian Grazer:
http://books.simonandschuster.com/A-Curious-Mind/Brian-Grazer/9781476730752
My Invisible Life: inspirational stories about living with illness: http://www.myinvisiblelife.net/
Gaucher & Rare Disease Specific Stories:
Elaine Benton (blogger), The Huffington Post United Kingdom: www.huffingtonpost.co.uk/elaine-benton
Let's shoot the breeze about Gaucher disease: A collection of poems about Gaucher disease, a rare genetic disorder by Elaine Benton:
http://www.amazon.com/shoot-breeze-about-Gaucher-disease-ebook/dp/B0101P4F9U
Great Necessities: A Gaucher Memoir by Wayne D. Rosenfield:
http://www.amazon.com/Great-Necessities-A-Gaucher-Memoir-ebook/dp/B012YJ1V2K
Stepping Up: Your Stepping Stone Forward by young adults with Gaucher disease type III, Gauchers Association (UK): www.gaucher.org.uk/information/type_iii_transition_booklet
Expression of Hope (lysosomal storage disorders art gallery), sponsored by Genzyme: www.expressionofhope.com
Spotlight on Gaucher Film Contest, sponsored by Shire: www.spotlightongaucher.com
Patient Survey Results 2015, National Gaucher Foundation, Inc.: http://www.gaucherdisease.org/NGF_2015%20June_July%20Patient_Survey_Results_Final_8.24.15.pdf
Technology, Social Media & Patient Engagement
How to Promote Your Rare Disease Story Through Social Media (Rare Toolkit) (coming soon)
PEW Research Center's Health Fact Sheet: www.pewinternet.org/fact-sheets/health-fact-sheet
Rare cancer meets social media, Never Been Better:
http://jamforfries.blogspot.ca/2014/11/rare-cancer-meets-social-media.html
Health Storylines (apps for tracking health): https://healthstorylines.com
SuperBetter (game for health): https://www.superbetter.com/
Gaucher Specific (networks to join):
Gaucher Disease & Related Disorder Yahoo Group (listserv): https://groups.yahoo.com/neo/groups/gaucherdisease/info
National Gaucher Foundation, Inc. (USA) public Facebook Page:
www.facebook.com/National-Gaucher-Foundation-333921202263/
Closed Facebook Groups -
Gaucher Disease Group:
https://www.facebook.com/groups/GaucherDiseaseGroup
Gaucher’s Disease 2/3 Group:
https://www.facebook.com/groups/gauchers23
Campaigns:
International Gaucher Day (October 1st) 2015 Rare But Not Alone, European Gaucher Alliance: http://www.eurogaucher.org/gb/international_gaucher_day
October: Gaucher Disease Awareness Month:
http://www.gaucherdisease.org/gaucher-awareness-month.php
#RareButReal2015 EURORDIS Photo Contest: http://www.eurordis.org/photo-contest
Faster Cures: www.fastercures.org
Saving Eliza (Cure Sanfilippo Foundation) Go Fund Me: https://www.gofundme.com/ElizaONeill
#digitalfriends: www.digitalskills.com/volunteers
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