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The Importance of Social Media for Rare Disease Patient Groups
Sorsha Roberts Online Communications Officer, AKU Society sorsha@akusociety.org
Media for Rare Disease Patient Groups Sorsha Roberts Online - - PowerPoint PPT Presentation
Media for Rare Disease Patient Groups Sorsha Roberts Online - - PowerPoint PPT Presentation
The Importance of Social Media for Rare Disease Patient Groups Sorsha Roberts Online Communications Officer, AKU Society sorsha@akusociety.org 1. Patients on Social Media 2. Reaching Communities 3. Learning to Engage 1. Patients on Social
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- 1. Patients on Social Media
- 2. Reaching Communities
- 3. Learning to Engage
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- 1. Patients on Social Media
- 2. Reaching Communities
- 3. Learning to Engage
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found information
- nline
42% 42%
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- f 18-29 year olds
89%
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“After a bit of research on the internet, I came across Black Bone Disease, and we requested he be tested.”
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- urth
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- 1. Patients on Social Media
- 2. Reaching Communities
- 3. Learning to Engage
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1000 1000
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Patients are on social media
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Reduce isolation
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Improve education and awareness
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Improve standard of care
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- 1. Patients on Social Media
- 2. Reaching Communities
- 3. Learning to Engage
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patientslikeme.com
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rareconnect.org
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Patients are using it- so should you!
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sorsha@akusociety.org @AKUSociety @SorshaRoberts