Wednesday, February 29, 2012

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.

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