Your Online Health: workshop resources



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 
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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 CanadaGaucher Disease, Evolving Landscapes, conference:

GaucherCanada YouTube video playlist for workshop: 


Storytelling

My Normal Resource List: http://www.mynormal.ca/p/links.html

10 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

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