How We Can Motivate Scientists to Research Rare Diseases

Rare disease research usually isn’t the first thing med students think to specialize in. Mostly, because it’s such a small field and it’s not extensively covered during medical school.

Let’s be honest: these diseases are rare. There’s a ton of other information that has to be taught and graduate school already takes years to complete. From a basic curricular standpoint, it makes sense that rare diseases are not the focus.

However, that doesn’t mean they aren’t important. For those who do learn about the field and decide to get involved, it’s often one of the most rewarding paths of study. What we have to work on is educating the next generation of researchers about the importance focusing on rare diseases. Because it is SO IMPORTANT.

Besides making a difference in the lives of individuals who are far too often ignored, investing in rare disease research can mean:

  • Finding connections between various rare disorders
  • Uncovering cures
  • Making new discoveries that expand the scientific field
  • Increasing the medical community’s knowledge about common diseases

An easy way to inform scientists of these rewards is by sharing the stories of real patients who are affected daily by these diseases. People like you.

Obviously, researchers care about helping people–it’s why they’re in the field they’re in!

Informing them of this huge community of people who are lacking research attention is often all you have to do to entice researchers to join the fight.

“Collectively, rare conditions are not so rare, affecting a total of nearly 25 million Americans,” says Jyoti Madhusoodanan, author of the article “The Challenges of Rare-Disease Research”.

And it’s never clear just how beneficial a discovery will be until it’s shared. What we have to focus on is igniting the passion for rare disease research in new scientists, and encouraging them to collaborate with each other. The thing is, many commonalities between disorders are discovered by accident. If we actively search for them, we may be able to speed up the process of finding cures.

While collaborative databases are becoming more accessible and more frequently utilized, there’s still more work to be done. And we still need more hands on the job. If we become more vocal, we’ll undoubtedly attract the interests of researchers. Additionally, the more funding we’re likely to receive. Because unfortunately, nothing in this country is accomplished without money.

Since Jyoti’s article on The Scientist was published in September, there have been great strides made for rare diseases within the medical community. There is still very clearly a challenge, but as we become more vocal advocates, we have the power to stimulate study.

Read more of Jyoti’s article here.

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