One of the more popular provisions of the Affordable Care Act (ACA) prohibits insurance companies from excluding coverage for individuals with pre-existing conditions. For families with children suffering from extensive medical conditions due to rare disease, this is a welcomed feature of the new health care legislation. Parents who were in between jobs without coverage…
Can Our Society Afford to Provide Treatments for People with Rare Diseases?
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…
Little Miss Hannah Foundation receives Genzyme’s Patient Advocacy Leader award
The Little Miss Hannah Foundation was awarded the Genzyme Patient Advocacy Leader 2012 Award for our school-involved World Rare Disease Day program! We were only one of 9 organizations world-wide to receive this honor along with a grant to help us expand our program. We are very proud to receive this award for our Little…
Resource Friday: Maximum Hope Foundation
Maximum Hope Foundation, created by actor/comedian Brad Garrett. It is their belief that no family should have to choose between paying their bills and attending to their son or daughter as he or she battles to survive. Many parents lose income or employment as a result of taking time off to care for their little one,…
Letting Children Share in Grief
Repost from the New York Times, written by Catherine Saint Louis A FEW decades ago, children often didn’t attend funerals. The thinking was that they should be sheltered from the pain of losing a loved one. And as Americans started living longer, the need to even broach the subject of death was delayed because…