Social Media-Rare Disease (Luis Luque, Manuel Armayones)
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Transcript of Social Media-Rare Disease (Luis Luque, Manuel Armayones)
![Page 1: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/1.jpg)
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How can things change?
By implementing a comprehensive approach to rare diseases
By developing appropriate public health policies
By increasing international cooperation in scientific research
By gaining and sharing scientific knowledge about all rare diseases, not only the most “frequent” ones
By developing new diagnostic and therapeutic procedures
By raising public awareness
By facilitating the network of patient groups to share their experience and best practices
By supporting the most isolated patients and their parents to create new patient communities or patient groups
By providing comprehensive quality information to the rare disease community
Source: Eurordis
![Page 2: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/2.jpg)
2By implementing a comprehensive approach to rare
diseases
![Page 3: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/3.jpg)
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![Page 4: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/4.jpg)
4By developing appropriate public health policies
![Page 5: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/5.jpg)
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![Page 6: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/6.jpg)
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![Page 7: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/7.jpg)
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By gaining and sharing scientific knowledge about all rare diseases, not only the most “frequent” ones
By developing new diagnostic and therapeutic procedures
![Page 8: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/8.jpg)
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![Page 9: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/9.jpg)
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By gaining and sharing scientific knowledge about all rare diseases, not only the most “frequent” ones
By developing new diagnostic and therapeutic procedures
![Page 10: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/10.jpg)
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By raising public awareness
By facilitating the network of patient groups to share their experience and best practices
![Page 11: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/11.jpg)
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By supporting the most isolated patients and their parents to create new patient communities or patient groups
![Page 12: Social Media-Rare Disease (Luis Luque, Manuel Armayones)](https://reader033.fdocuments.us/reader033/viewer/2022061220/54876bc2b4af9f5f388b4ed7/html5/thumbnails/12.jpg)
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Thanks for your atentionThanks! More Questions???