The eurordis charter of good practise for online patient discussions

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EURORDIS - Rare Diseases Europe

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The Eurordis Charter of good practice for online patient discussions

Eurordis Charter for patients’ discussion lists (1) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Eurordis Charter for patients’ discussion lists (2) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Eurordis Charter for patients’ discussion lists (3) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

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10 guidelines for the content of the messages ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Legal obligation ,[object Object],[object Object],[object Object]

Participation of doctors, other health professionals and scientific researchers ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Limits to what can be written ,[object Object],[object Object],[object Object],[object Object],[object Object]

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Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Fever Syndrome (TRAPS), also known as Familial Hibernian Fever (FHF) is a rare, dominantly-inherited autoinflammatory disease that is caused by a mutation in the TNFRSF1A gene. The RareConnect team worked with moderators from the TRAPS community and a TRAPS medical professional to create this 30 question poll on living with the disease in order to understand the experiences of people living with this rare disease. The poll was open on RareConnect.org for 6 months and was sent to all members of the TRAPS community on RareConnect. 66 people completed the poll in English, German, French, Spanish, and Italian. The charts below is the summary data from those participants responses. For more visit: https://www.rareconnect.org/en/community/traps-syndrome/article/living-with-traps-poll

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