Igniting the flame...

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 www.PHAssociation.org/RDDBanner 
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. 

Rare Disease Day... February 29

Today is Rare Disease Day.

To mark the occasion, PHA partnered with the American Thoracic Society and pulmonary fibrosis groups for a Congressional briefing on pulmonary hypertension and pulmonary fibrosis.  About 40 Congressional offices sent representatives - many because our volunteer advocates contacted them and asked. 

Dr. Susan Shurin, the Acting Director of the National Heart Lung and Blood Institute, hosted and Dr. Seril Erzurum of the Cleveland Clinic and Chair of PHA's Research Committee told the story of the development of PH research and the encouraging story of where she sees it going.  As she spoke of the 9 treatments developed across three unique pathways (endothelin, nitric oxide, prostacyclin) - with two Nobel prizes given for this work - she spoke of new targets and movement towards a cure and the importance of research in this field to other diseases as well.  Her presentation was inspiring but no more so than Nicole Cooper's who spoke movingly of her own journey with PH from diagnosis to her recent operation to remove arterial clots (CTEPH).

When I came back to the office, I read Colleen Brunetti's great blog for Rare Disease Day.  Colleen, a fine writer from the mind and heart reminds us that a disease is not rare if it is in your own body, that treatments are not a cure. 

I encourage you to read Colleen's blog, too.