Wednesday, February 19, 2014

Igniting the flame...

A Sleeping Giant: 30 Million Living with Rare Disease. Rare Disease Day - February 28, 2014

Sometimes simple words can ignite a flame…

That’s the way I felt some time ago, when I was reading a piece from the National Organization for Rare Disorders (NORD). The words were: 

There are 30 million Americans living with a rare disease.

It’s a stunning number with extraordinary possibilities. 

When NORD encouraged the rare disease community to participate in this year’s Rare Disease Day on February 28, PHA decided to jump in. We asked Publications intern, Kristie Link, to design a Facebook/website banner around:

A Sleeping Giant: 30 Million Living with Rare Disease

Last week we launched it on PHA’s Facebook page. We then began asking our community to copy the banner onto their Facebook pages and/or websites. We asked our members to do this. We asked the pharmaceutical industry. And, we asked NORD (who we have worked with for many years) to make it available – with the same request – to the 200 rare disease organizations that are their members. Many of those we have asked are responding, including NORD, who will be circulating the banner and request this week.

PHA has never been an organization satisfied to howl at the moon. We know that posting a banner is not an end. It is just a beginning. We are hoping that a rapid and large response will demonstrate that the rare disease community is ready to be heard.

We believe that creating a better life for rare disease patients is no different than any other effort to change the political and social landscape. It requires a constituency… a large and well-organized constituency with shared and targeted goals.

Our limitation has always been our belief that we are rare. Thanks to NORD, we now know that we are 10 percent of the U.S. population. Our potential for positive change is unlimited.

The question now is whether we have the will and ability to find – and the strategic sense to successfully engage – The Sleeping Giant that is us.

We invite you to join us in taking the simple first step today. Copy the banner and post it on your Facebook page and/or website and ask family and friends to do the same.

Here’s how: 
  1. Go to 
  2. Right click on the banner 
  3. Choose “save picture as” or “save image as” 
  4. Save the banner on your computer 
  5. Post it to your Facebook cover, blog or website 

Thank you for jumping in and making Rare Disease Day a wake-up call and a doorway to new possibilities. 

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