A Connecting Platform
A well-functioning community offers more than just a platform for contact. It's a safe place where people share experiences and support each other. For patient organizations like Spierziekten Nederland (Muscle Diseases Netherlands), communities are essential for connecting their members.
Secure Private Environment
This private setup is crucial, confirms Gemma Bierman from Spierziekten Nederland. "We saw this when we launched our renewed Myocafé on Procurios' Communities platform in 2020. Members indicated they primarily needed a safe environment where they could trust that information is reliable and moderated. That's why we have a mix of public and private channels within the platform. In the private section, people know they're talking with like-minded individuals, which provides peace of mind."
"Success for us is when members support each other. It's wonderful to read that people help each other, share information, and truly benefit from one another. That's when you know your community works."
Online and Offline Complement Each Other
Spierziekten Nederland doesn't see their online community as a replacement for physical meetings, but as a valuable addition. Gemma: "Mutual contact is one of the core functions of our organization. We organize about 70 physical meetings annually, but an online community offers the opportunity to stay in touch continuously. Our members often have rare muscle diseases, so it's helpful when you can find each other through the community. Additionally, discussions often revolve around shared themes like pain, fatigue, and assistive devices. In the community, people can talk about these issues, exchange tips, and support each other."
Moderation: Well-Organized
A well-functioning community requires moderation. At Spierziekten Nederland, this is organized through volunteers from working groups who not only organize live meetings but are also responsible for moderating the online channels. "We have a community coordinator as the first point of contact for our approximately 30 moderators," Gemma explains. "This requires resources and structure, but it allows us to keep the community running smoothly and vibrant – an important prerequisite for success. The moderation tools of the Communities platform help us tremendously with this."
What Success Looks Like
When is a community successful? For Spierziekten Nederland, it goes beyond statistics about membership numbers or post counts. Gemma: "Success for us is when members support each other. It's wonderful to read that people help each other, share information, and truly benefit from one another. That's when you know your community works."
Safety as a Foundation
Ultimately, safety is the foundation of every successful community. Gemma: "To provide safety, we've established house rules for the community. For example, you can't promote commercial offers, medical advice, or alternative remedies as medical advice. There are always people who test these boundaries. Fortunately, it doesn't happen often, but when it does, such a post is immediately visible to 5,000 community users. Our moderators are trained to address this quickly and adequately, but it sometimes requires attention."
Social Media and Community
Gemma: "Social media also provide places where people connect. Our added value lies in the safety we offer and the reliability of information. That's what members appreciate. With Procurios' online community, we also have control over our own data, which isn't the case with public social media."
Lurkers Count Too
Not all members are visibly active in a community, but that doesn't make them less important. Gemma: "We call them 'lurkers' – people who don't respond but do read along. There are many of them, and they absorb a lot from the information being shared. For us, they're just as much a part of the community."
Future Plans
Spierziekten Nederland continues to work on improving their community. "We collaborate with Procurios to better tailor the platform to the needs of our diverse target groups."
The organization is proud of what their community has already achieved. "The most important thing is that people find each other," says Gemma. "When members support each other, give tips, and progress together, we know we've created something valuable."
