Knocking on doors…

knocking on doors. Blogpost by Bernardus Muller

Social Media and Rare Diseases

Like I said in my blog post entitled “Extraordinary Measures“, it’s all about BIG data. How can you make it easier to be discovered online? Especially when you want to connect with fellow patients, raise awareness for your cause, and raise more money for your disease?

Here’s a short overview of what’s out there and some ideas to get started…


In the world of social media, Facebook seems like a logical place to start; you already have a network of friends (and their friends) that can help you get more “Likes.” From a practical perspective, you have a built-in targeted audience who likes your page and is interested in you. What more could you want?

There are over 150 Facebook pages devoted to ALS/MND. I probably haven’t found them all, but the point is that most of them are not connected to each other. The reach is limited to separate, local communities instead of a larger global one. To complicate matters, you also have to be very specific with regards to the content on your profile page and bio, otherwise your page won’t be found. It is a terrific medium for interaction and providing information, but you unfortunately still miss people that are not using the social network.

Facebook also seems to be the wrong platform for fundraising. Maybe this will change when the platform introduces a payment system in 2014. Unfortunately, many Facebook users are only “viewers” and not “participators.” Judging from my own experience with my community of contacts, only about one third of my friends are active, with the rest (a dormant majority) only watching passively and occasionally interacting.


The infamous 140 character message board of Twitter is not only useful for sharing news and pushing opinions to your followers, but also even handier for interacting with fellow patients and other advocates. However, it is crucial that you make yourself known to tweeters by using useful hashtags in your messages, having an informative bio, and keeping an up-to-date description of yourself on your profile. Otherwise you might remain hidden anonymously amongst the other 300 million users, sending roughly half a billion messages every day. I use programs like HootSuite and SocialBro to optimise my hashtags, to find fellow patients, advocates and associations, and to effectively target tweeters interested in other rare diseases and chronic illnesses.

I can see that many users are not used to these tools, but rest assured that the amount of tweeters on rare diseases correlates with the real world prevalence of our conditions. This means that becoming a trending topic is hard work.  On you can find the healthcare hashtags that are most used on twitter. It’s a very good start for you to have a look at how you can improve your chances of being found online.

As a fundraising platform Twitter is useful to grab attention, but due to the structure of the tool, you always have to refer tweeters to an external site.


There are many blogging sites, but the three I would like to mention here are Blogger, Tumblr and WordPress. Honestly, I only started blogging a couple of weeks ago. Why? Well, I guess before now, I wasn’t ready for it…and after doing some research, I ended up with choosing WordPress. The simple user interface and layout attracted me, but it is all very personal. You have to find the one which suits your needs. With blogging you can write your story and share your opinions in more than 140 characters…


If you want to raise awareness, video is the way to do it! If a picture is worth a thousand words, a video is worth even more. You can show the world how relentless and cruel your disease is, that it needs everyone’s attention, and that a cure must be found…but hey, remember again, it’s all about the BIG data!

Everyone wants to make a viral video like “Gangnam Style” and “Charlie Bit My Finger.” Or maybe not? Think twice about who your target audience is and who you really want to reach. If you want to reach the entire world, take another look at my blog “Extraordinary Measures.”


Most people think that email is over, but I would argue from my own experience that for fundraising purposes, this is absolutely not true. Out of a targeted email campaign sent to 1,300 addresses, I got over 50% to open, 14% to click and 3% to actually donate to my charity. Whether or not you possess  a large database of email addresses, email is still the best way to get people into action and donate for your cause. If you think it’s too difficult, just try MailChimp for free and you will see that it’s dead simple.

World Wide Web

A website is still the best way to inform the public, but the landscape of design and setup of websites is rapidly changing, pressed by the growing prevalence of tablets. Today’s websites should be very simple, with fewer buttons and preferably, a scrollable one-page design.

Many of you won’t need a website as you can easily refer to the homepage of your local associations, but for fundraising purposes, there are many online platforms, such as Fundly, GoFundMe and JustGiving, where you can initiate your fundraising action for your cause and connect it directly to your charity. Keep in mind that you still need to promote this via Twitter, Facebook, etc.

I hope I’ve helped to guide you through the various options you have to advocate for your illness via social media. Let’s all work hard to improve the attention for our causes!

For various reasons, like small communities, only news or photo sharing, etc., I have left some options out of my review. Here are some of the others: Google+,, Instagram, Pinterest, and Flickr.

And if this digital forest of possibilities still seems a bridge too far, well get your hat, go out and start knocking on doors to tell your story…

One Man.

For more reads :


About BernardusMuller

Dutch entrepreneur. #ALS #MND fighter since 2010, initiator @_makeityours & solutionist @treewaytherapy. One man can and will find a way, why not be that man...

Related Posts

Leave a Reply