Rare Disease Day - February 28, 2014

Breath of Hope became a member organization with NORD (National Organization of Rare Diseases) in 2010.

By statistics alone congenital diaphragmatic hernia (CDH) is considered a rare or often overlooked birth defect/disease.  For those of us who have had children ten, fifteen and even twenty years ago we know the availability of treatments for CDH infants and survivors has increased.  We know overall the survival rates have also increased to 60% but still not where we would like them.  We also know there are more research studies dedicated to diaphragmatic hernia and pulmonary hypertension today.  We also know that adult survivors seeking medical treatment and long term follow up care are limited.  Most practicing physicians outside the pediatric world have very little experience.  Without collaborating with organizations such as NORD, we would not have the advancements today.

A rare disease in the US is one that has less than 200,000 patients in the United States.  CDH falls into that category.  Pulmonary Hypertension (PPHN) also falls within that category and a high percent of CDH patients have PPHN.

There are 30 million Americans who are affected by rare diseases.  This years international theme for Rare Disease Day is "Join Together for Better Care".  As we celebrate on February 28, we recognize there have been many advancements in medical research and policy developments which give hope to those families affected by CDH and other rare or often overlooked conditions. 

Alone we are rare, together we are strong™

You are welcome to go to this link Press Kit with free downloadable graphics you can share on your blog, Facebook pages or other social media. 

As we celebrate, we also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community. - See more at: http://rarediseaseday.us/about/goals/#sthash.KWrx5JtY.dpuf

this year’s international theme is, Join together for better care! - See more at: http://rarediseaseday.us/about/goals/#sthash.KWrx5JtY.dpuf

this year’s international theme is, Join together for better care! - See more at: http://rarediseaseday.us/about/goals/#sthash.KWrx5JtY.dpuf