Rare Disease Poll
April 12, 2010

            Imagine finding out you or a loved one has a life-threatening disease or condition.  Then, finding out that the disease is so rare, there is little to no information, research, studies, or treatment.  That is, of course, assuming the disease was even common enough to be diagnosed.  This is a reality for one in ten Americans.  And while apart, these rare diseases may affect smaller groups of people, together there are 30 million people affected by rare diseases. 

            In a survey asking how important people thought it is to research rare diseases in comparison to more widespread diseases, the results were:

            Less important 16%

            Equally as important 70%

            More important 12%

            Not sure 2%

           

     75% of respondents were women, and 25% were male.

            Jim Gibbons, the governor of Nevada issued an executive proclamation on February 8, 2010 declaring February 28, 2010 as Rare Disease Awareness Day.  By receiving attention at all levels, rare diseases are coming to the forefront of the minds of Americans.  In his proclamation, the Governor wrote:

“Whereas  diseases such as ‘Lou Gehrig’s disease’ are well known, while others, such as ‘Erdherim-Chester Disease’ remain unfamiliar to the public, so that, affected citizens have a large burden while raising research funds; and whereas nearly one in ten Americans have rare diseases, therefore, thousands of Nevada residents are affected; and  whereas the National Organization for Rare Disorders, patients, medical professionals, researchers, government officials, companies in support of treatment development and citizens are bringing such rare diseases into focus for the public in order to bring awareness to the State of Nevada concerning this public health issue.” 

            The National Institute of Health estimates there are approximately 6,800 rare diseases.  Of those, 75% affect children.  Since so many rare diseases have ties to more common diseases and conditions, research for even those that are the most rare of these diseases is crucial, and can be the key to ensuring fulfilling lives for millions from the discovery of treatment or a cure for one rare disease.  That over 80% of people surveyed believe that rare disease research deserves equal or more importance proves that awareness for rare diseases is prevalent and affects many people in some way.

More on awareness:

            The movie, Extraordinary Measures, focuses on a family whose two children have life-threatening diseases.  The movie was released in January, 2010 and was based on the true story of Aileen and John Crowley whose children had Pompe’s disease.  The film shows the parents’ willingness to do anything to save their children, including financing and ensuring research for treatments.  The trailer for the movie is below:

Dr. Oz Show Monday March 8, 2010
March 16, 2010

Photo Courtesy DoctorOz.com
Photo Courtesy of ToledoFreePress.com

 

     Kaylee Halko and her parents, Tim and Marla appeared on the Dr. Oz show Monday. Staffers had contacted them after viewing the TLC documentary “6 Going On 60” that Kaylee appeared in.

     Progeria Research Foundation Medical Director Leslie Gordon and University of Michigan’s Dr. Jeffrey Innis joined the Halkos on the show.  Dr. Innis originally diagnosed Kaylee in 2004 and practices at University of Michigan C.S. Mott Children’s Hospital.

    Audrey Gordon told the Toledo Free Press that they were thrilled the medical show was interested in Progeria and raising awareness for the rare condition.