Rare Disease Documentary

RARE: A Documentary On Rare Diseases

An ongoing challenge that the medical industry has been faced since day one, is the difficulty with which it takes to treat rare diseases. With modern technology it’s now possible than ever to develop these treatments, however, there are still a number of a major factors the prevent this from happening, and as you may have guessed, it always comes down to the money…

With high hopes of changing how things work, many experts are doing what they can to raise awareness about this issue, and one of the latest, attention grabbing pieces of media shedding a light on these problems is highly informative documentary on Rare Diseases simply called ‘RARE: A Documentary’.

The documentary takes a look at financially incentivized medical system surrounding rare diseases; mainly focusing on the large percentage of children affected by these unique medical conditions, and why there isn’t more already being done to help these innocent children diagnosed with the bleakest of futures in which, there’s often little hope.

RARE: A documentary follows the plight of several families who are told there’s no cure for their children’s rare diseases. They also learn that it’s on them to raise the millions of dollars it will take to find one if that’s even possible.

The film highlights the challenges of treating rare diseases. For example, finding and correctly diagnosing is just part of the problem; there must then be effective medications and/or treatments that can either cure or at least improve a patient’s lifestyle. And since these medical conditions are, by their nature, rare, there’s often little information, let alone any treatments. The difficulty in developing these treatments is largely what stands in the way of creating medications for rare diseases since the low number of sufferers directly leads to a low financial gain, even if the medication can be manufactured at a reasonable cost and made available on the market in the traditional way.

This leads many experts to believe that a radical change in how we develop treatments for rare diseases is necessary. Otherwise, the financial hurdles that the industry must overcome will remain far too large. For example, the company explains that how we consider cancer to be over 200 different diseases immediately limits funding for research and development, but if we think of things in the aggregate, that is, classing cancer as an overarching term in which one medication developed should lead to the next, and in turn, eventually combating each of the 200+ variations, this would therefore increase funding, research, knowledge, and access to it, which in turn would see more scientists take part and development grow exponentially.

Fortunately, there are many scientists willing to help, even if the biotech companies making and manufacturing the medications aren’t. While this currently requires fundraising in the millions, the fact that there are people willing to focus on this less financially rewarding avenue gives these families hope.

RARE- A Documentary On Rare Diseases

Ideally, the ultimate goal would be to change how the medical industry operates, not necessarily for all fields, but at least those that fall under the rare disease classification. Although this may seem like a pipe dream in the current climate, new technology, such as gene editing and CRISPR, could converge with a different approach to finally allow treatments for rare diseases to be more regularly developed and readily available.

Visit the TooRareToCare website to watch the documentary or learn more about the film and its company.

The site allows anyone to donate to the cause (tax-deductible) and calls for others willing to share their stories of living with rare diseases. You can sign up for email notification updates to stay up-to-date on any and all progress.

Visit the RARE: A Documentary website over at TooRareToCare.com 

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