Today we spoke at the Postviral Ethics Conference. Watch back our talk: youtu.be/epIC1TV8XnQ?... Short summary of what we talked about in this thread: - ThreadSky

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niethersteld.bsky.social • 28 days ago

Today we spoke at the Postviral Ethics Conference.

Watch back our talk:
https://youtu.be/epIC1TV8XnQ?si=ghxryT1xLkmtEKip

Short summary of what we talked about in this thread:

Comments

niethersteld.bsky.social•28 days ago

In our contribution we talk about who we are and what we do as #NietHersteld, how we try to make the voices heard of ALL patients with a Post Acute Infectious Syndrome (PAIS), especially groups that are often overlooked, such as severe patients,

niethersteld.bsky.social•28 days ago

patients with other PAIS than Long Covid, and children.

We discuss the importance of accessibility and inclusion, how we try to include those values in the way we shape our activism, and how we need solidarity from able bodied allies to become more visible in society.

niethersteld.bsky.social•28 days ago

We also talk about our own knowledge gaps and about how important it is that doctors, journalist, policy makers, researchers, etc. work on their knowledge gaps: they need to see and hear different patient perspectives to get a more accurate and deeper understanding of these illnesses.

niethersteld.bsky.social•28 days ago

Thank you @vmatthiesboon.bsky.social for organising this event!

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