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Getting Better Care – Message from the National Rare Disease Day 2014 Partners February 12, 2014

Posted by mvarlan in Uncategorized.
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 “Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.”

Learn how this event aligns with the mission of Hope for HH in Lisa Soeby’s blog post @ http://hopeforhh.org/blog/2014/02/getting-better-care/ 

 

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

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