Zak’s Promise
“Opening Doors” For Prader-Willi Syndrome My wonderful son Zak was born with a rare genetic disease called Prader-Willi Syndrome (PWS). Although my wife and I may not have felt lucky at the time, we now know that we were blessed with good fortune when Zak was diagnosed as a newborn. Kids were mostly being diagnosed with [...]
Dr. Vivien Keil – Coping with Medically Fragile Children
Dr. Vivien Keil, December 1, 2010 – Welcome to Holland Let me share a brief story about a family coping with their son having a rare medical illness in which a bone marrow transplant was the only hope for his survival. Their son was in the hospital for several months and so I was fortunate [...]
Imagine A World Without Disease
Fact: If you discover that you are at increased risk for a disease, there are actions you can take to decrease the likelihood that you will get the disease or to limit its impact on you if it should ever manifest.~ Brandon Colby, MD Imagine A World Without Disease. This world may one day be [...]
The Global Genes Fund: Innovations for medical science in the internet age
November 16, 2010 Emil Kakkis, Kakkis Everylife Foundation Blog When I started out doing research and trying to get a simple treatment for a rare disease into the required clinical trials process, I did not realize how difficult it would be to get support, or that parents raising money for me would be the key [...]
Scientific Notes: Rasmussen's Encephalitis Conference Oct 2010
RE Scientific Research Notes: Deer Valley, Utah Oct 2010 In October the RE Children’s Project sponsored a first of its kind research conference devoted to advancing medical research into RE. Please click on the link above to review the scientific notes from the conference. For more on what we are doing to find a cure [...]
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community Dana Point, Calif. (June 29, 2010) – Every parent needs a supportive, collaborative network full of information where medical professionals, researchers, patients, parents, advocates and the general public share knowledge about the rare childhood diseases that affect 22.5 million American families. RareSpace is [...]
Tips to help your doctor put the “Missing Clues” together by Dr. Geeta Nayyar
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 way. As a Rheumatologist, who sees patients with rare diseases [...]