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I wonder if people truly understand what it means if their rare disease or disorder is on the RARE List™? Last week, the R.A.R.E. Project and Global Genes Project, leading patient advocacy organizations...
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Blog Hop 2012 -- a program of the RARE Project to bring awareness to Word Rare Disease Day 2012. For Blog Hop 2012, MarbleRoad shares info about their IndieGoGo Campaign, a benefit concert, and the Ra re...
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Weekly Grace 3
(Also known as the better late than never edition):
1. So I mention deadlines a lot but the deadline is approaching in just a few days, and as I am in the thick of it, my husband has b een...
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Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point, CA) Rare Disease affects 350 million people worldwide, con sisting...
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Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Glo bal...
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Fridays feel like a good day to take stock—the grind of the week is behind me, the promise of the weekend and all I want to fit into it is just ahead. So, small things that have an impact today: 1...
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Guest Blog by Sarah E. Kucharski of the Afternoon Nap Society A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society will use social media to connect patients and healthcare...
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(CNN) — Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog that this happened to her 3-year-old daughter, and it has s parked...
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World Rare Disease Day 2012 is coming up on February 29th. Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers...
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Taking the lead from Rachel, I thought I’d try doing Grace in Small Things. Realistically I can probably only do it weekly, but it’s a start, and it’s a nice way to be appreciative o f...
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