5 ways to engage your online rare disease community

by Robert Pleticha

People living with a rare disease have a lot in common. No matter the country, religion, or culture, everyone affected by a rare disease shares a strong common interest to understand how to manage the symptoms and live normally. This community sense is different than the local neighborhood feeling. It creates strong ties between families and lasting connections, many often only virtually.

If you are living with a rare disease, an international community in which to share your knowledge in means you have a global picture of living with the disease and are able to come join together on important issues like fundraising, registries, and support for everyone, not just those that speak English.

How do you engage in an international online community for your rare disease?

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1. Create a common goal and communicate clearly to your community on how you are going to achieve that goal. Examples of goals that unite rare disease groups include: crowdfunding projects, patient surveys to better understand needs, awareness days, and clinical trial recruitment.

Your messages here need to be clear, simple, and have the potential to reach each member of your global community. People have a natural desire to be involved in movements that produce something concrete. Highlight the different steps involved in the project so that all members understand where they can contribute. Levels of contribution may vary, but make the goal inclusive to boost adherence to your messages and requests.

Create lists of tasks that need to achieve a project or goal. Ask community members to work on specific tasks to harness the full potential of your community.

2. Questions to your members should focus on the idea that each persons’ contributions are especially valuable because of their unique knowledge of the disease. Each member has a unique perspective to share. All contributions in a rare disease community are valuable because of the variation of symptom presentation in most rare diseases. A “typical” case or treatment plan may not exist.  Creating a community for everyone to participate in means less isolation and increased information on living with the disease.

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3. Write individual messages to ask people to do things for the community. People can be slow to respond in a community because there are others present. It is assumed the question is for someone else, or that another will come to tackle an important need. Community moderators are better off asking both in the public section of the community and while individually writing to others to ask for their participation.

Once you get a few people to contribute, others will be more likely to participate. Expect to have under contribution on your community, unless you do something about it.

4. Seek to engage people and have conversations in your community. Page views, Facebook fans, and newsletter subscribers are all great, but high numbers here don’t necessarily mean people are loyally engaged in the community for their rare disease or able to share their needs. Use your community as a communication channel to stay informed on the needs of members and people living with the disease globally.

5. Collect the knowledge that has been generated, summarize it, and present it back to the community for feedback. A primary goal of rare disease online communities is to build knowledge on living with the disease.

Don’t keep answering the same questions over and over again on the community, collect good responses and refer people there when topics come up again. We do this on RareConnect by preserving conversations and tagging posts with topics. You could also work with other moderators to create a white paper or authoritative report or guide helping readers to understand an issue, solve a problem, or make a decision.

What strategies do you use to create strong bonds between members of your community?



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