Editor's choices
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 [...]
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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
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 accessible, and [...]
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 [...]
The EMEA is now called European Medicines Agency and the portfolio of pharmaceuticals is being transfered from DG Enterprise to DG Health & Consumers.
This decision is part of a significant reshuffle of responsibilities assigned to each Designated Commissionner in the Barosso II European College of Commissionners. For this decision to be implemented the new Commissionners need first to be approved by the European Parliament in January / February. This transfer is an important change. All [...]
The Commission’s Decision to create the EU Committee of Experts on Rare Diseases should be published between Mid and End November 2009.
The creation of this Committee is one of the well expected concrete implementing measures of the adoption of the Commission Communication on Rare Diseases in November 2008. The publication of the decision was already expected since July 2009, however other priorities like the EU strategy to address the challenges of the H1N1 flu epidemic [...]
Categories
EU Rare Diseases Policy»
- The EMEA is now called European Medicines Agency and the portfolio of pharmaceuticals is being transfered from DG Enterprise to DG Health & Consumers.
- The Commission’s Decision to create the EU Committee of Experts on Rare Diseases should be published between Mid and End November 2009.
- Rare diseases at the forefront to address the healthcare challenges of the future
Blogger’s list
CEO EURORDIS
CEO, NORD- Director of the Office of Rare Diseases (ORD) at the NIH
- Director, FDA Office of Orphan Products Development
- President, EURORDIS
