R.A.R.E. Blog
Short takes on the day-to-day of living with rare disease.
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Jan 25, 12 11:10AMCharities 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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Jan 24, 12 07:35PMSempra 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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Jan 19, 12 01:11PMGuest 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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Jan 18, 12 02:32PM(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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Jan 12, 12 09:57AMPatient Stories of Hope and Inspiration – To be shared with the world every day in the month of February 2012! Thank you to all those who have submitted stories of hope and inspiration! We rsquo...
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Jan 12, 12 09:35AMLunch Briefing on January 17th
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Jan 10, 12 01:23PMIt’s Charity Tuesday and we want to give a shout-out to a new charity called “Courage to Make a Difference” founded by Chris Dutcher. Chris has Hunter Syndrome (MPS II) and wants to spread...
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Jan 09, 12 10:04AMShivani B. Nazareth, RARE Blog contributor and a board-certified genetic counselor with Counsyl, Inc, is conducting an anonymous survey to better understand the financial cost of caring for a...
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Jan 05, 12 07:41AMRare Disease Day at NIH (RDD@NIH) On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration and recognition of the vari ous...
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Jan 03, 12 03:45PMHas your family submitted to the “Rare Children’s Storybook Project” yet? Your story could win up to $750 to help with medical costs. The deadline has been extended to January 13. Ma rbleRoad...
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