For most of us, when we go to the doctor with symptoms, we are diagnosed and treated. Imagine going to the doctor and being told there were no answers as to why the symptoms were occurring. Then imagine, this is your child and all the [...]
Two Women Linked by Rare Disease, Fibromuscular Dysplasia (FMD)
March 4, 2013 by Leave a Comment
When Caroline Floyd and Natali Pulver met for the first time recently, they had plenty to talk about. The women – Floyd lives in Rock Hill, Pulver in SouthPark – are two of several people in the Charlotte area who have fibromuscular dysplasia, or FMD, [...]
Getting Out More than You Put In: Advocates for Health
May 14, 2012 by Leave a Comment
It’s a matter of return on investment. We give. We give our time, our energy, our talents. what do we get in return? What do we get out of what we put in? In love, in life, in our family, in our work, in our [...]
Rare Pictures of Hope™ – Submit Your Hope Stories and Photos Today!
April 19, 2012 by 1 Comment
When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s In My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook leading up to World Rare [...]
A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society
January 19, 2012 by Leave a Comment
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 providers while raising awareness of World Rare Disease Day (coming up [...]
Tips to help your doctor put the “Missing Clues” together by Dr. Geeta Nayyar
June 22, 2010 by 3 Comments
This is my first post on the R.A.R.E. Blog and I would like to say how honored I am to have been invited to be a contributor. I really admire the mission of this network and hope that I can be valuable in some small [...]
