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Declare February 28 Rare Disease Day

This petition made change with 141 supporters!


I am promoting this cause to bring awareness to this day. I hope that  in doing so it will lead to more funding for research, better insurance options, and understanding of just how deeply these conditions effect the lives of the children and adults that carry these burdens.  My daughter, who turns 6 next month, has had four upper endoscopies, plus numerous other assorted procedures, and has a total of 10 individual safe foods.  She currently gets a majority of her nutrients through a prescription formula.  To date we are awaiting transfer to a better medical facility for outpatient care in NYC.  While her disease is not immediately life threatening, she is at risk for anaphylactic reactions and food impactions, swallowing issues, and malnutrition.  Her only treatment options are food trials and repeated upper endoscopies. This is just one of the rare diseases that need acknowledgment and recognition, please join us in bringing these individuals out of isolation and into the community. 

 The following information was taken from Raredisease.org

“Everyone knows someone with a rare disease,” said Peter L. Saltonstall, president and CEO of NORD.  “Rare Disease Day is a time to show support for the 30 million Americans – and millions more around the world – living with rare diseases.”

A rare disease is one that affects fewer than 200,000 Americans.  There are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health (NIH).  

Two-thirds of those affected by rare diseases are children, and the diseases tend to be serious and lifelong.  Even so, most rare diseases have no approved treatment, and many are not even being studied by medical researchers.  Often, research on rare diseases is funded by the families and friends of patients or by patient organizations.   

On Rare Disease Day, patient organizations around the world unite to promote awareness of the challenges, hopes and needs of those living with rare diseases.  For 2014, the focus is on caregiving, and the global theme is “Join Together for Better Care.”

For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).

 Please see this site for a list of all rare diseases:

http://www.rarediseases.org/rare-disease-information/rare-diseases/viewIndex?tab=W

 



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