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…
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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…
June 7th – TGI Fridays Fundraiser and Media Donation Event
(be sure to bring the event flyer on June 7) Celebrate the last day of school with us and help us raise money for the Little Miss Hannah Foundation! 20% of all food purchases will go towards LMHF. June 7th – 11 am to 1:00 am – ALL DAY! Many of our LMHF families’ brothers…
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…