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The Power of Patient Support Groups
By Christina Coates, HODA Board President The advent of social media has been both a blessing and a curse to patient support groups. As the leader of a relatively new rare disease patient advocacy group, I have a difficult time conceptualizing how pre-social media support groups were able to locate and engage their people. Social media has…
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What is Disability Porn and Why Do People Love it?
Written by Christina Coates, HODA Board President I am new to the disability community. I am learning what that really means daily. I’m learning about communication and advocacy in the disability space. I’m also learning about the community as a whole and even the dreaded “disability porn”. The learning curve on many of these issues has…
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Pick a Rest Day or Your Body Will Pick it For You
By Christina Coates, HODA President I knew it was coming. Oftentimes, I like to fool myself into believing that I have complete control over the storm between my ears that is sometimes calm and sometimes raging. I tell myself I’m OK. That I can handle it all. I don’t need to rest. It started weeks ago…