Your Online Health: workshop resources

Sunday, October 18th, 2015
“The most exciting innovation in healthcare today is people talking with one'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 CanadaGaucher Disease, Evolving Landscapes, conference:

GaucherCanada YouTube video playlist for workshop: 


My Normal Resource List:

10 Ideas for Getting Started on Your Story, My Normal:

Global Genes Rare Toolkits:

Using Storytelling to Raise Awareness for Your Rare Disease (Rare Toolkit):
Resource Guide: 

A Curious Mind: The Secret to a Bigger Life by Brian Grazer: 

My Invisible Life: inspirational stories about living with illness:

Gaucher & Rare Disease Specific Stories:

Elaine Benton (blogger), The Huffington Post United Kingdom:

Let's shoot the breeze about Gaucher disease: A collection of poems about Gaucher disease, a rare genetic disorder by Elaine Benton:

Great Necessities: A Gaucher Memoir by Wayne D. Rosenfield:

Stepping Up: Your Stepping Stone Forward by young adults with Gaucher disease type III, Gauchers Association (UK):

Expression of Hope (lysosomal storage disorders art gallery), sponsored by Genzyme:

Spotlight on Gaucher Film Contest, sponsored by Shire:

Patient Survey Results 2015, National Gaucher Foundation, Inc.:

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:

Rare cancer meets social media, Never Been Better:

Health Storylines (apps for tracking health):

SuperBetter (game for health):

Gaucher Specific (networks to join):

Gaucher Disease & Related Disorder Yahoo Group (listserv):

National Gaucher Foundation, Inc. (USA) public Facebook Page:

Closed Facebook Groups -
Gaucher Disease Group:
Gaucher’s Disease 2/3 Group:


International Gaucher Day (October 1st) 2015 Rare But Not Alone, European Gaucher Alliance:

October: Gaucher Disease Awareness Month:

#RareButReal2015 EURORDIS Photo Contest:

Faster Cures:

Saving Eliza (Cure Sanfilippo Foundation) Go Fund Me:

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