The following article is going to be published next month. A 10 year longitudinal study found the prevalence of JORRP in people under 20 to be between .6-1.1 per 100,000 people with prevalence higher in the younger patients. As with most research articles published about RRP in the last few years, the authors wonder what the impact of the . . . → Read More: prevalence of JORRP in Australia
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 The Global Genes Project strives to build unity around rare disease research, funding, advocacy and information by creating a platform for collaboration, while building awareness, educating and engaging support from the general public. They are a relatively young project that has already made a tremendous impact in the rare disease community. Click here to . . . → Read More: An opportunity to share your story Some facts and figures supporting the need for an organization like Tombolo. An estimated 79,784 children in MN receive health care services at home that is provided by their families.  Hello! This is Nora writing today about health insurance. There is always something to contest, appeal, argue, etc., with the insurance company, isn’t there? In all fairness, the boys have UCare coverage and the people that I talk to at UCare always seem courteous and competent. But nonetheless, the system is laborious and scary. I just had . . . → Read More: another nail biter  There was a great piece in MPR this morning about managing chronic illnesses in the elderly and how and when to have end of life conversations. It was titled “When ‘overmedicalization’ goes too far”. There was discussion of the Gawande article that we highlighted last week and the speakers were Katy Butler: Author of a recent New York Times article, . . . → Read More: Chronic illness is not a string of acute events  Dr. Rob is widely published but I just recently came across his blog, Musings of a Distractible Mind: Thoughts of a moderately strange (yet not harmful) primary care physician. It is wonderful! He’s a compassionate and reflective physician who is willing to put his inner most thoughts out there for us to cherish, disparage, or discuss. A . . . → Read More: Dr. Rob shares what it’s like to treat patients with a chronic illness Faith’s Lodge is a place in MN where parents and families facing the serious illness or death of a child can retreat to reflect on the past, renew strength for the present, and build hope for the future. Faith’s Lodge recently posted a facebook status that said “We are often asked what are ways to remember your . . . → Read More: Remembering a child who has died  An article this morning in the StarTribune.com stated that Children’s Hospitals and Clinics of Minnesota is planning to build a top-level pediatric trauma center on its Minneapolis campus, This project will take place with the help of a $17.5 million gift from UnitedHealth Group Inc. Currently there are only four Level 1 trauma centers in the state . . . → Read More: Children’s to upgrade its trauma care I just recently signed up to get emails from Families USA about a number of topics. The first email I received was full of a number of thorough and extensive resources related to minority health and health care disparities. I’ve included the resources below. Were any of them helpful to you? Let us know! Warmly, Nora How Health Reform . . . → Read More: Families USA’s Minority Health Initiatives Tools The letter below was written by Richard Cohen from the National Health Council. It’s poignant, simple and well written. I love it. And I have to admit, that being the single parent of a child with a chronic illness has felt quite similar to me. It’s both brought me closer to my friends and family, and made . . . → Read More: The Loneliness of Chronic Illness |
   
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