This part of Rare Disease Blogs is dedicated to US Government policy vis à vis Rare Diseases. In 1983 US Congress passed the Orphan Drug Act which opened the door for drug development for the treatment of diseases which up until then had little interest from pharmaceutical companies.
The summer of 2010 saw remarkable activity related to the development of treatments for rare diseases. The U.S. Food and Drug Administration hosted a two-day public hearing for patient advocates, industry, academic researchers and others to voice their views on current procedures and possible ways to improve them.
The Senate HELP (Health, Education, Labor and [...]
The National Organization for Rare Disorders (NORD) considers today’s announcement by the Social Security Administration (SSA) of expansion of the “Compassionate Allowances” program to be extremely important to patients and families affected by rare diseases.
Since Michael Astrue became Social Security Administrator, he has provided strong leadership in addressing issues that were very difficult and discouraging for [...]
In the U.S., the health care reform process has been extremely confusing to many people. The language in the various bills is complex. And many of the proposed changes won’t take effect for several years, even if enacted now.
NORD’s position on health care reform, from the very beginning, has been that any plan needs [...]
