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Melanoma Patient Network Europe

Share4Rare webinar VII: ‘Online Advocacy – Social Media & Valuable Tools’

Webinar Online Advocacy
The internet has fundamentally altered the way and the speed with which we access information- and that also plays a major role in patient advocacy! Melanoma Patient Network Europe is a patient organisation sharing years of experience in the field of patient advocacy and effective communication. In this Share4Rare webinar we share their learnings with the rare disease community.


In this webinar, Bettina Ryll, Gilliosa Spurrier-Bernard and Violeta Astratinei from the Melanoma Patient Network Europe will share learnings and best practices from their work in patient advocacy.

You will hear about the importance of patient forums: Why do patients join patient forums? What makes a patient forum a good one? And very importantly — what can you do to keep the patients on your forum safe? We share learnings on how to prevent the spread of fake news and what to do when you are afraid someone might have a dangerous side effect to therapy.

Another topic that will be discussed is how different social media channels can help you reach different audiences, and how to get the best of free knowledge resources to stay up-to-date in your area(s) of interest. Questions that will be discussed: How do you best access scientific articles? And how do you share your learnings with your network so that it reaches as many people as possible?

Handy online tools make your life as a patient advocate easier. We will share how to better communicate with your colleagues, how to organize events on the cheap without drowning in the admin burden, how to neatly classify- and share- the articles you are reading and how to create knowledge resources for your community.


The hour-long webinar will take place on Wednesday April 22nd, 19:00 CET. Do you want to learn more about effective social media and online advocacy? Register here!



Patient advocacy