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Rare Diseases Go Mainstream

Posted by | 10:34am on Thursday, April 14, 2011

there are more than 7,000 rare diseases that, taken together, affect about 30 million Americans 

In the past few months, there’s been an increase in media attention to rare diseases. National Public Radio (NPR) has featured two segments on rare diseases and The New York Times had an interactive piece on six rare disease patients and the other day highlighted Charcot-Marie-Tooth disease.  Rare Disease Day (the last day of February) was also recognized by a wide variety of news outlets.  Even an episode of “Chopped All-Stars” on the Food Network featured a chef competing to win funds for a rare disease foundation.

This is quite a departure from what once could be described as an ignored, isolated group of patients and caregivers.  Are rare diseases becoming mainstream?

Though a rare disease by definition affects fewer than 200,000 people in the U.S., there are more than 7,000 rare diseases that, taken together, affect about 30 million Americans. And, as the NPR pieces discussed, this is a web-savvy, vocal bunch.  With doctors having never heard of many of the diseases, caregivers and patients alike turn to the web and social media to find out more and to find others like them.  Quickly, they become both experts and advocates.  They use any outlet they can find to get the word out, whether it is creating a foundation or a Facebook group.  Either way, they refuse to suffer quietly.

What Are They Saying?
It is this persistence that may have grabbed mainstream media’s attention.  In the NPR piece “Patients Seek Moral and Medical Support Online,” rare disease caregiver and advocate, Pat Furlong, discusses the necessity of this persistence.  When her sons were diagnosed with Duchenne muscular dystrophy in the 1980s, her doctor told her there was no hope and that they were going to die.  She ignored her doctor and created the Parent Project Muscular Dystrophy which now has more than 3,000 members. You can read Furlong’s story, along with other caregivers, in the book that Siren published: Uncommon Challenges; Shared Journeys.

In a later NPR story, “Web Communities Help Patients With Rare Diseases,” the importance of the internet to the rare disease community is examined.  Interestingly, the piece shows how high internet activity amongst the rare disease community not only creates feelings of camaraderie, but also makes doctors’ jobs easier as the patients are coming armed with plenty of information. The National Organization for Rare Disorders (NORD) collaborated with the Pew Internet & American Life Project to do this research on the internet use of rare disease patients and caregivers.

No doubt the creation of Rare Disease Day by EURORDIS and the sponsorship in the U.S. by NORD has also contributed to the increased attention.

Implications For The Future
It sounds like people, or at least the media, are listening.  Indisputably, this is a good thing for the rare disease community.  In terms of patients and caregivers, more acknowledgment of this community can diminish the feeling of isolation, the feeling that there is no one else out there that understands.  People are being made aware that there are resources, both support-based and medical-based, out there for people affected by rare diseases.  With more mainstream media raising awareness, people who may never have even heard about a rare disease may be compelled to donate or continue to help raising awareness.  Donations and awareness can in turn lead to even more resources for the rare disease community.  The benefits will certainly continue to be seen in years to come and it will be interesting to see what the future holds.

What do you think?  Will the media spotlight on rare diseases soon fade away?

(Image courtesy of Todd Huffman on Flickr.)

About Caryn Steinman

Caryn is currently pursuing her Master of Public Health degree with a concentration on Health Policy and Administration at the University of Illinois at Chicago. Her work at Siren complements her passion for patient advocacy and skills in accomplishing the day-to-day tasks of marketing, public relations and business development.

View other posts from Caryn

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    14 April 2011 at 3:04pm
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  • 14 April 2011 at 3:04pm
    RT @EileenOBrien: Are #RareDiseases ...
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  • 19 April 2011 at 12:04pm
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  • http://twitter.com/eileenobrien Eileen O’Brien

    This US Today article is another example of the increased media attention to rare diseases. Check it out: Push to Spur More Drugs for Deadly Rare Diseases http://usat.ly/erHjWK. The writer makes the important point that larger innovations often come as a result of these rare treatments.

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