Rare Disease Day: A Good Day to Reconsider Our Value of Rare

Rare 

When we speak about things that are rare, we tend to talk in terms of value. The more rare an item is, the higher the value. Diamonds typically have a value of around $5,000 per carat, while the highly rare painite gem can fetch more than ten times that amount. 

Collectors search for the most rare, the most unique, knowing they will add the most value to their collections. Rare gems, rare coins, rare automobiles, you name it, the less common, the higher the value.

There is one rarity, however, that has been overlooked. One rarity that this world doesn’t value at all. And it’s the one rarity that should be given the most consideration. It is the individual who must face life with a rare disorder. 

The Medical Experience

Individuals with rare disorders are one of the most marginalized groups on the planet. And it begins within the medical community, a place you would expect to find the most consideration. However, the medical community has such little interest in them that it often takes at least five years for an individual to receive an accurate diagnosis. 

When it comes to treatments, only about 5% of the 10,000 known rare diseases have approved treatments. That number is abysmally low, but not entirely surprising when you consider the lack of value placed on this community. With relatively few people in need of such treatments, there is quite literally not enough money to be made from them. On the rare occasion a treatment is developed, it is often entirely too expensive for most individuals. 

The Social Experience

As low as their value is within the medical community, it is nearly nonexistent in society at large. Individuals with rare disorders often exhibit visible symptoms of their disorders that conflict with societal norms. They are often ostracized or bullied by peers who are uncomfortable with their differences. In addition, they are frequently forsaken at school or work by the very people tasked with accommodating them.

There is much talk and social media content encouraging us to teach our children to be kind to those who are different. We relay to our youth the story of The Ugly Duckling, but rarely do we ever exemplify its message in our daily lives. Let’s be honest, our children are mimicking what they observe every day from the world around them. For as much as our society touts its acceptance of differences, only certain differences are truly acceptable. 

The Fantastical Experience

Even in our world of make believe where anything is possible, the rare community is ignored. Look no further than your favorite streaming service, and you will see how little such individuals are valued within our society. 

Very few movies or shows include such a character. If they do, it’s typically a small part and they show only half the story. You don’t see such an individual’s life in a realistic sense. They don’t spend half the show in and out of doctors’ offices, and they don’t show the difficulties many face navigating spaces inaccessible to them. They use them as targets for bullies and victims for protagonists to save. In the end, the bully is either humiliated or redeemed, outcomes as rare in our society as the disorders themselves.

Rare Disease Day

Still, we do our best to hide our apathy. We have given this community a whole day of recognition, after all. It falls on the last day of February, the most unusual month of them all. Which means every four years it will be held on the rare February 29th. Clever, right? We take a single day out of the year to show our support. Thus, our recognition and support of this community is as rare as the disorders themselves. Frankly, we need to do better. 

Donate Responsibly

We need better incentives and funding for rare medical research. Today, the rare community must rely heavily on philanthropy to move research forward. Sadly, it falls to the already burdened families dealing with these disorders to initiate and maintain that philanthropy. And, the task of fundraising gets more challenging each year. 

With the growth of sites like GoFundMe, the competition for charitable contributions is greater than ever and our lack of value for the rare community is on full display. Thousands of dollars are given to ridiculous campaigns while rare disease research struggles to find funding. People eagerly donate to fund someone’s fiftieth concert experience or an alcoholic’s bar tab, but can’t be bothered to give money that could change the lives of so many.   

Walk the Talk

We also need to practice what we preach to our children by actively interacting with those in the rare community. Stop ignoring or trying to avoid them. Engage them in conversation, invite them to participate and offer help when needed. 

If you know someone with a rare disorder, take the time to learn about their disorder. With a little knowledge, your interactions with them will be more enjoyable for both of you.  

We need to value these people at least as much as we value any other human life. We need to recognize that these individuals and their families have experienced a life of adversity few will ever know. Often neglected by the medical community and rejected by society, they simply want to be seen and accepted. Like rare gems, these rare individuals weather a tremendous amount of pressure, and it is up to us to recognize their value.