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Originally posted on Neely’s Miracle. It’s why I built this site… Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of the story I hope to share with this web-site. Neely’s condition and recovery have inspired many families over this year to share their stories with us. We’ve heard stories of amazing recoveries, rare conditions, frustrations with [...] This is a repost from the Children’s Rare Disease Network. It’s so poignant and familiar. I could feel my heart racing as I read this story. xo nora ***** May 5, 2010 by Debbie Vaughan This is one of the posts from my blog, “Coming Unglued”, about life with Ehlers-Danlos Syndrome which is a rare connective tissue disorder in which the body’s ability to produce [...] The iWish project is managed by CheckOrphan. Please visit their website for more information. iWish is designed to give rare diseases a voice and a face. Through your help, together we can help change the way the world looks at rare diseases by sensitizing people to their monumental [...] Even though this blog is about rare diseases and their impact on children and loved ones, I think its interesting to explore other topics related to biology, physiology, sociology, philosophy, etc. Essentially I find a lot of seemingly unrelated things to be connected and like to spend time thinking and talking about overlap and the [...] I have to admit that I have been moved to tears more than once today. Health care reform was passed last night and my son now can’t be rejected from plans due to his pre-existing conditions. Several times we have have been without insurance and it has been terrifying. He needs frequent surgeries to be able to [...] |
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