Media for Rare Disease Patient Groups Sorsha Roberts Online - PowerPoint PPT Presentation

Dec 05, 2023 •285 likes •558 views

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

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 Media 2. Reaching Communities 3. Learning to Engage
42% 42% found information online
89% of 18-29 year olds
“After a bit of research on the internet, I came across Black Bone Disease, and we requested he be tested.”
ourth
1. Patients on Social Media 2. Reaching Communities 3. Learning to Engage
1000 1000
Patients are on social media
Reduce isolation
Improve education and awareness
Improve standard of care
1. Patients on Social Media 2. Reaching Communities 3. Learning to Engage
patientslikeme.com
rareconnect.org
Patients are using it- so should you!
sorsha@akusociety.org @AKUSociety @SorshaRoberts

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