An appeal to the medical world: the importance of the acknowledgement of the expert by experience

Expert by experience

There’s a good chance that you have heard of the ‘expert by experience’. A person who can provide information and help others based on his/her own experience(s). And it ain’t for nothing that experts by experience are such a great help in the medical world.

An example

Let us give you an example of how the expert by experience can help out in the medical work. A patient that has a (rare) condition goes to a medical professional. In all his ability, that professional helps him and gives him proper treatment. After this treatment, the professional sends him on his way with advice on how to go on with his/her life and a word of good luck on his lips.

The person being helped has never been in a situation like this before. He doesn’t know how to act, what to expect and what to do. You probably are starting to see the problem here. Medical professionals are doing their job (often very good), but do not have all the knowledge, time and experience to help the said person in the most perfect way possible. Helping someone to live with a rare condition is more than just treating them. It is listening to someone, helping them reintegrating into society and making sure that their quality of life keeps improving.

The solution

But there is a solution. One that is actually known to many, but for numerous reasons has proven hard to incorporate. We are talking about the expert by experience. People that have walked exactly the same path as the said person is going to walk. People that have a big contribution to give to the medical expert: self-obtained expertise. Invaluable, if you ask us. But there is one problem, and that is that a lot of experts by expertise are still not (fully) heard and utilized in the medical world. Why?


Let us explain that to you. Firstly, we will explain the certain roles that an expert by expertise can fulfill. Furthermore, we will explain why it is hard to include the expert by expertise in the medical world and show you the way we have found to merge the medical professional's know-how with that of the expert by expertise.

Examples of the various roles the expert by expertise can fulfill

A complementary role to that of the medical professional: an expert by expertise knows what it is like to have a rare condition. How it feels. And also, the expert by expertise knows what in his case worked best. What kind of food, drink, exercise, information, love and so on can be a huge relief? Combine this with the help of a medical professional, and you are sure to improve the quality of life of the person being helped.

Help after treatment: an expert by expertise knows that when the medical professional says you are ready to go on with your life, it isn’t as simple as that. You have to learn to live with your condition. That does not have to be a problem, it will even make you stronger. A more unique person. But having someone guide you along that path out of his own experience, that is a great plus, right?

Stimulating change: how better to address things that aren’t going well in the medical world, then out of your own experiences? You can show the medical world how you were helped and what kinds of improvements can be made. As a medical professional, it can be hard to come to these insights, as you have to stop and analyze what you are doing right and wrong. And time is quite often a luxury in the medical world.

As a role model: quite often, people that are being helped by a medical professional have a hard time. There is a lot of uncertainty about yourself, your body and the effects your condition is going to have. Seeing people that have the same rare condition as you being successful is a huge boost. A way of realizing that a rare condition can make you stronger and offer opportunities.

And there are quite some other roles we have now not even explained. What about stimulating social support? Being the voice for the social reintegration of people with (rare) conditions? Giving information about the prevention of problems? The list is numerous.

What is the hold-up?

Why then aren’t experts by expertise fully incorporated into the medical world? Well, mostly, it is because this requires time and energy. Medical professionals have to find a way to work in a professional manner with experts by expertise. And also, it can be hard to take advice/critique from someone without a medical degree.


What to do? We at Rare Care have found the answer. We don’t want to sit on our backsides and complain that experts by expertise aren’t being recognized enough. No, we chose to set up a way for experts by expertise to be heard. One place to bundle information given by experts by expertise and information given by a medical professional. One place that provides information about diagnosing, managing, and social support regarding rare conditions.

Our mission is fulfilled when the knowledge of the patient is acknowledged globally. When the voice of the expert by expertise is never ignored. And for that, we got use your help. Spread the word! Don’t hesitate to tell others about how experts by expertise can help them and seek those experts out. On Rare Care, for example!


Last modified
6 March 2020