Community Sessions

We want to make sure that our Community Sessions are a space where people can share their experiences, know that others are going through the same thing, and learn from each other. By leveraging our shared experience, we can help transform the patient journey as well as direct future research. To do that properly, we need to make sure that everybody has equal opportunity to be heard. We've set some basic ground rules for attending these sessions. We think they're pretty fair, and we think you will too:

1. Respect the opinions of others

We all share a condition, or an interest in the same condition, but that doesn't mean our experiences are all the same. What works for one of us, might not work for another. Don't force your thoughts about the condition on other people, and don't deny the reality of others. We hope that all those affected by myodesopsia can listen to the experience of others and learn a little from it, even if it doesn't perfectly match their own.

2. Keep it clean

We get it. Living with myodesopsia can be a very intense and emotional experience, but let's try to make sure this is a safe space for everybody. To ensure we do this, avoid foul language and profanity wherever possible. 

3. Don't give medical advice

We are all here to share experiences and learn from each other, but we don't fully understand everybody's unique situations and medical history. As such, nobody attending a Community Session should try to give medical advice to another attendee, or push them to try any particular treatment avenue. It's okay to say what you've tried and how you feel it has worked for you, but don't try to force it on other people.

4. Don't try to sell anything

It should go without saying: do not try to sell any kind of product, including supplements or any other kind of treatments, to other attendees.

5. Respect the moderator

Our moderators are patients just like you. They are volunteers giving their time willingly to try make a difference for people with myodesopsia. Please listen to what they have to say, and respect their decisions. The Charity reserves the right for the moderator to remove disruptive attendees from the Community Session if they feel it is negatively impacting the experience of others.