When we were working on the new RareConnect re-design; we knew we wanted to have a big place where people could discuss general topics that are not specific to a particular community. We came up with the idea to build a community for all RareConnect members and we called it General Discussion Community (GD community for friends).
This community comes from the necessity we observed throughout all these years. Every week we receive tens of emails from people asking if we know other people with the same disease and ideally in the same country. When we suggested the possibility of creating an online community with us some of them told us that they weren’t looking for this level of commitment in that moment. They only wanted to “plant a flag” somewhere and wait because they thought that in the near future maybe someone in the same situation would search their disease on RareConnect see their post and reach out. This “plant a flag” concept stuck in our minds for a long time and we also hated seeing them turn away because we couldn’t offer anything.
In the current rare disease panorama where you have online communities, facebook groups, whatsapp groups, forums, mailing lists… It’s totally normal that not everybody will want to build another space and scatter the patients even more. Not everybody wants to be responsible for a community with all that this means (moderation, promotion, answer questions, start conversations…).
However, when patient’s needs are very specific or the disease/mutation is ultra-rare and finding support online is almost impossible, when the questions are transversal and not disease specific, the General Discussion community might be the best option.
What sort of post can you find there?
– People with ultra-rare diseases looking for others
– People trying to educate themselves about rare diseases
– Questions that are country specific (example: How do I get disability benefits in my country?)
– Awareness and crowdfunding campaigns
– Lots of posts about chromosome disorders
RareConnect has millions of visits per year and it’s the only 8 languages platform focused solely on rare diseases. This makes the General Discussion Community the perfect loudspeaker, doesn’t it? So consider planting your flag on the General Discussion Community. We like to see it as another of your multiple efforts to find other people with the same disease.
Once or twice a month we gather the latest posts on the community and make a Facebook post in different languages. It has a huge reach and our audience helps with the dissemination too. This increases the chance to find someone!
Why don’t you give it a try? Search for your disease, see if others like you are already part of RareConnect and if not, then plant your flag!