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Challenging times in 2010 for Rare Disease patients in Europe
Times of austerity always affect those who are already most in need and vulnerable. For this reason 2010 may become a year with serious setbacks for Rare Disease patients. Already a number of disappointing news confirm this apprehension: Recently we learned that the compromise on the directive on cross boarder health care will not bring [...]
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Challenging times in 2010 for Rare Disease patients in Europe
Times of austerity always affect those who are already most in need and vulnerable. For this reason 2010 may become a year with serious setbacks for Rare Disease patients. Already a number of disappointing news confirm this apprehension: Recently we learned that the compromise on the directive on cross boarder health care will not bring [...]
Information to Patients Debate 2010 – as if the Internet was still a walled garden
Being diagnosed with cancer, or experiencing a recurrence, often puts individuals and their families in an emotional roller coaster ride. Moreover, treatment decisions often need to be taken quickly. To make an informed choice between the bad and the ugly, patients desperately seek for quality information. Whilst the political debate around “information to patients” and “advertising” has been going on for years as if a walled garden would still exist, or could still be built around Internet websites, European patients continue to suffer from the lack of access to quality information while the alluring bait of miracle healers, counterfeit online pharmacies and door-to-door advertisers continues to be omnipresent. “Information to Patients” now requires new courage, commitment and real action now – the current EU political momentum on “Information to Patients” is timely and welcome.
NORD Applauds SSA for Expanding “Compassionate Allowances”
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 [...]
Hello from FDA/OOPD
KMS8P5K78ZNN Blogging is an edgy new avenue for governmental communications with its citizenry. While my Google search on “Federal blogging” turned up numerous examples of productive use of this media throughout the Fed, I can’t find any other FDA office that’s doing it. Nevertheless, our office has a rich tradition of being publicly [...]
Lifetime and Annual Caps Issue Not Yet Resolved
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 [...]
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CEO EURORDIS
CEO, NORD- Director of the Office of Rare Diseases (ORD) at the NIH
- Director, FDA Office of Orphan Products Development
- President, EURORDIS
