One profound shift in healthcare enabled by the internet is the Web’s ability to be a common platform for huge numbers of low-volume diseases. This is the “long tail” effect that makes Amazon and eBay a success, selling vast numbers of items you never would have seen before the Web.
The difference, of course, it that this isn’t about obscure books; in this case lives are at stake.
Wendy White of Siren Interactive supports Rare Disease Day. We ran her post about it last year; she’s back. Be inspired by this great cause – and be aware.
Imagine that your health is failing or that your child is very ill, but the doctor can’t figure out what’s wrong. This goes on for a number of years, despite multiple visits to specialists. Then when you do get a diagnosis, you learn that you may never meet anyone else who has this disease or has even heard of it since it affects only a few thousand people. Unfortunately, this describes the experience of many people with rare diseases.
That’s why it’s so important to increase awareness of rare diseases. February 28, 2010 has been designated as worldwide Rare Disease Day to call attention to the public health issues associated with rare disorders. A rare disease is one that affects fewer than 200,000 Americans. Yet, because there are more than 6,000 rare diseases, 1 in 10 people in this country are impacted.
In the U.S., Rare Disease Day is being sponsored by the National Organization for Rare Disorders (NORD). As experts in helping organizations communicate with small patient populations, Siren Interactive is partnering with NORD to promote Rare Disease Day.
Siren designed a website and developed a social media strategy that included Facebook and Twitter to provide access for the rare disease community to the many ways that NORD offers to participate in this movement.
Raise Your Hand
Lundbeck Inc., a pharmaceutical company dedicated to improving the lives of patients affected by complex central nervous system disorders and rare diseases, is supporting Rare Disease Day 2010 by launching the Raise Your Hand to Fight Rare Diseases campaign.
Individuals simply click the Raise Your Hand icon posted to http://rarediseaseday.us, as well as Lundbeck’s home page, and can also access a widget to spread the word through social networking sites. For everyone who clicks the icon during February, Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research.
So raise your hand, tweet and share your story in support of Rare Disease Day.
To stay connected with this conversation and receive alerts on new postings, please subscribe via RSS, or sign up for our monthly newsletter, Adventures in eMarketing, to receive a roundup of the top rated blog posts, associated reading lists and relevant insights.
This post was contributed by Wendy White, Founder and President of Siren Interactive. You can connect with her on Twitter @sirenwendy.
In collaboration with NORD, we just completed a survey of Inspire members with rare disorders in recognition of Rare Disease Day.
Here are some highlights: Of the 554 respondents,
– 68% have a rare disorder, and 32% are caregivers.
– 81% are female, and 19% are male.
– The average age is 47, and the median age is 48.
– 41% reported that their doctors are not knowledgable or barely knowledgable about their disorder.
– 58% said that they are receiving treatments that are moderately or highly effective.
– 37% are not sure if there are FDA-approved treatments for their rare conditions
– 45% are not sure if there are off-label treatments for their rare conditions
– 22% first met another person with their condition through the Inspire community.
– 58% said that being a member of the Inspire community has improved their health.
– 41% were not previously familiar with Rare Disease Day.
To read the complete results of the survey, visit this page:
https://www.inspire.com/survey/rare-disease-day-2010/group/rare-disease/results/
For more information about the survey methodology, please contact me or email research@inspire.com