Creating Compassionate, Respected Online Rare Disease Communities: 7 Tips For Success

In a previous article, I talked about the importance of patient-led advocacy groups and how they can positively impact how a rare diagnosis is received and understood by patients.  Do Google It – The Benefits Of Patient Led Advocacy opens communication channels between doctors and patients and provides online sanctuaries where rare disease patients can support and share experiences, all under an umbrella of evidence-based advocacy.

But how can we achieve this? I’ve put some of my suggestions for creating a compassionate and respected online rare disease community into this article for you.

Up-To-Date and Evidence-Based

Especially in the area of rare diseases, you need to remain up to date. Holding onto outdated information in this area can potentially put people at risk and lower your community’s respect and esteem.  Acknowledge the pioneers of your diagnosis for sure, but embracing new research and findings as they come in keeps your community relevant.

Keep and maintain a database of relevant papers that patients can use to advocate for their care and ensure that your knowledge is up to date. If you need an expert, approach research teams and connect with them.

Share this research regularly, but also share why your group should be interested in this information. Give tips on how it should be used; a summary of the paper is a great idea.

Offer opportunities for members to share their advocacy tips and tools they’ve used to get help as well.  In the rare disease community, a diagnosis shared is often one that someone else may need help with, and another may have a resource!

Moderation Matters

From creating and enforcing rules that the content in the group is relevant and suits your group’s purpose, the people you choose to help run your group are essential.

Your moderation team represents your group – they are your face and your voice on critical issues. It’s not always about choosing your friends, but rather the people who can help balance the group and create a diverse outlook on your topic. You don’t have to be best friends with them, but you have to work with and trust them. In the same regard, you can’t do things alone.

Look for people who engage regularly, have achieved milestones (advocating for care, experience in relevant fields), and have good communication skills.  Ensure you also cover various perspectives – survivors, lost parents, adverse events, and success stories. Diversity is also a strong point – all voices, nationalities, outcomes, and all members are represented equally.

In the beginning, this may not be possible – but it’s something to work towards.

Ensure you have a chat or internal communication to collaborate, discuss, and be transparent about issues.

Lead by example, and always acknowledge problems, show respect, and be open with communication and ownership of errors.

Rules and Regulations

Clear, simple rules that reflect the purpose of the group and the expectations of the admin team are essential.  In my group, we call them group values and outline what we value: Respect, No Medical Advice, Compassion, Empathy, Evidence-Based, Transparency, Relevancy, Friendship, Honesty, and Sharing.

These rules should be basic but laid out and structured. You also need to ensure that your moderation team is familiar with the rules and show that they can uphold them.

The moderation team must be held to the same rules as the rest of the group, and everyone treated equally.

Validating All Experiences

All your group members come from all aspects of a diagnosis. It is just as fundamentally important as making sure your moderation team covers these areas as it is to ensure that all experiences are heard.

Sadly, there is a high infant mortality rate in the community I belong to and devastating long-term effects.  Not every laser surgery is successful, and unfortunately, some parents make the heartbreaking choice to terminate or reduce their pregnancies.

For every success story, there is an equally devastating story.

Celebrate the successes and the milestones, but mourn the losses. Recognize the families whose stories are not a happy ending.  Members will come back because they want to hear the successes and know that they will be loved and supported when things don’t go perfectly. Discourage survivor bias, as this is an easy way to make the less successful stories feel isolated and pushed into the corners.

In the same regard, invalidating other’s experiences over your own is just a no-no. Every member has their own experience, and this needs to be shared and respected. Everyone is equal, and all experiences are educational opportunities.

Transparency and Honesty

I touched on this in the rules section, but to me, these stand out as values for online communities on their own.

If your community is attached to an organization, or medical team, or has partnerships – you must be honest and transparent about this. My community is linked to the TAPS Support Foundation, and we have several affiliations and memberships with patient organizations and groups that we work with. We openly disclose any activities from the foundation each week and update members on partner organizations as well.

But transparency and honesty also should be part of your messaging. The biggest problem with a rare diagnosis is that we often don’t know the answers, but doctors don’t know the answers either. Even though you are seen as an authority in the community, it’s okay to admit that you don’t know the answer, and that is perfectly fine.

But this also applies to when you are wrong, or someone comes in with new information you haven’t encountered.  Embrace this as an opportunity to expand your knowledge! It is okay to be inaccurate, and we are always learning. Communities respect leaders who are open to new ideas and embrace learning at the same time as everyone else.

What makes your group a leader is open, honest conversations, clear, precise information, and transparency. You must be open to changing your mind as much as you are open to changing the world.

Finally, a note about finances: if your group is attached to a foundation where you raise funds for a specific purpose, you must be honest and open about how that is spent. This does include publishing an annual statement about how you spend funds and consists of a statement clarifying if you receive a wage or salary from this foundation. Your members will respect you more and be more open to assisting with fundraising efforts.

Quality Content and Sharing Stories

We have all seen it – the link drops and consists of someone promoting their blog or even their miracle cure MLM product.

We should encourage meaningful content that fits the group’s purpose, especially in rare diseases. All stories should be shared, and the different experiences of people and the different approaches and knowledge add to respect. Small communities create a feeling of unity over a shared diagnosis, so encourage members to share their blog posts, media articles, and research journals, but make sure they also add commentary and engage.

And honestly, those promoting miracle cures and products should be removed and considered spam.

Connect and Invite Experts

Honestly, it doesn’t hurt to connect with experts in your rare disease area. It gives you access to the latest research, and there’s no harm in inviting them to your group to see what patients are asking. They can’t diagnose, but they can share information, keep your moderators in line, and also see your community as an insight into their area of expertise. It honestly doesn’t hurt!

Rare Disease Communities Are Vital

Rare disease communities need to exist because we need to find each other and share our stories. In a digital age, we may be separated by distance, but online we can still support, connect and create meaningful discussions.

Creating a compassionate, relevant community isn’t difficult. It does take time, patience, and an investment in your time – but they can be a valuable resource for patients and doctors when they run efficiently and effectively.  These tips have helped me create a thriving, respected community for twin anemia polycythemia sequence over the past few years, and by sharing them with you, I hope your community also thrives.

Many thanks to Twinfo,  Mono-Di Twins/Multiples Support, TTTS Hope and Connections, and Twin Anemia Polycythemia Sequence (TAPS) Support for their help and inspiration to write this article.

Stephanie Ernst

Stephanie Ernst

Who am I? I'm Stephanie Ernst, TAPS nerd and founder of the TAPS Support Foundation My passion for raising awareness for Twin Anemia Polycythemia Sequence comes from my own TAPS journey. My daughters were born at 31 weeks at the LUMC in Leiden, and my mission is to support research into TAPS, as well as connecting families diagnosed. Everyone should have access to the latest information and research about TAPS so they can advocate for the best level of care. And most importantly, no-one should ever be alone in their TAPS journey. Find our Facebook group here.

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