REPOST: A Medical Adviser to the National Organization for Rare Disorders (NORD) Responds to this Question WASHINGTON DC, Oct. 3, 2012—-Can our society afford to provide costly medical care for patients with rare diseases, or would that money better be spent on treatments for more common conditions affecting larger numbers of people? That…
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Crowdfunding helps little girl get one step closer to a diagnosis
Reposted from Talking Points Memo. Written by Carl Franzen. Crowdfunding, or fundraising over the Web by soliciting a mass of donors, is good for more than just financing pet projects like music albums and iPhone accessories. Just ask the Nieders: The New York family of three (and one dog, Parker) have been searching for answers to…
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…
Las Vegas Review Journal Article on LMHF
After losing their daughter to rare disease, a Henderson family has created a foundation in her honor BY MICHAEL LYLE (original article) VIEW STAFF WRITER Posted: Jul. 10, 2012 | 12:35 a.m. Even though Hannah Ostrea died when she was 3, her family plans to make sure her name and memory live on through the Little…
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…