To expand awareness of the rare disease process to our children, the National Institutes of Health has created a program to teach our 6th – 8th graders how rare diseases occur and how treatments could be pursued. This is so incredibly important, as it is this generation that will likely be working on cures and…
Rare Disease News
Meet Five Local Healthcare Heroes…
Reprinted from The Desert Companion The mentor: Dr. Jonathan Bernstein Pediatric hematologist/oncologist Caring about kids is in Jonathan Bernstein’s blood — in an odd, literal way, in fact. He remembers his father, a pediatric orthopedic surgeon, teaching him and his brother and sister how to draw blood when they were as young as 10 or…
Pediatric palliative care centers growing in the United States
Reposted from CNN: CNN Editor’s note: Dr. Barbara Beach is the co-founder and director of the George Mark Children’s House. Tune into Sanjay Gupta MD at 4:30 p.m. E.T. Saturday and 7:30 a.m. E.T. Sunday to learn more about pediatric palliative care in “The Gift of Charles.” It began with Jim. He was a big-hearted, courageous young…
Bipartisan Action Offers Rare Disease Patients Hope, NORD Says
Washington DC—–Millions of Americans who have serious rare diseases and no treatment may face a brighter future as a result of a bill approved today by the U.S. Senate, according to the National Organization for Rare Disorders (NORD). “We salute the Senate for decisive and bipartisan action in approving the FDA Safety and Innovation Act…
Will Patients Bear the Burden for Developing Their Own Treatments?
Reposted from The Atlantic, written by David A. Shaywitz Soon, you won’t only be responsible for managing your disease — you may also be expected to help find your own cure. Patients who take a close look at medical science in search of treatments are often appalled by what they discover. On the one hand, there’s…