The National Organization for Rare Disorders (NORD)


Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,150 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,150 diseases.

View sample report

Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

FDA Budget Coalitions to Merge as “Alliance for a Stronger FDA”
New Alliance Will Have 172 Members, Envisions Unity of Message and Greater Effectiveness

For Immediate Release
Contacts: Steven Grossman for the FDA Alliance, 301-879-9800
December 14, 2007
Ladd Wiley for the Coalition for a Stronger FDA, 202-887-4083

WASHINGTON, D.C., December 14, 2007 -- The Coalition for a Stronger FDA and the FDA Alliance announced today they will merge into a single organization known as the Alliance for a Stronger FDA. The merger will create a stronger, more multi-faceted organization dedicated to securing a higher level of Congressional funding for the Food and Drug Administration. With greater strategic depth and breadth and significant grassroots capability, the members of the new Alliance will deliver consistent messages to the American public, the media, Capitol Hill and the Administration.

“The new organization assures that patients and consumers will be heard, while enjoying the clout derived from having a common cause with other FDA stakeholders, including health professional groups, health voluntary agencies, and industry. More voices calling for additional federal appropriations for an abandoned agency cannot be ignored,” said Diane Dorman, Vice President for Public Policy at the National Organization for Rare Disorders, who will serve on the board of the merged organization.

Each organization will have the identical number of members on the merged board of the Alliance for a Stronger FDA. Wayne Pines of the FDA Alliance will serve as President of the group, while Ladd Wiley of the Coalition for a Stronger FDA will serve as Executive Director. The merger will take effect at the beginning of the next year.

“There is unanimity within the FDA stakeholder community that FDA has been chronically under funded and is at risk of losing its position as the world’s leading consumer protection agency,” said Wayne Pines, of the FDA Alliance. “This new Alliance will continue to help get the FDA back on track.”

“We believe this new Alliance will strengthen still further our ability to reach out to the Congress, the Executive Branch and the media,” said Ladd Wiley, Executive Director of the Coalition for a Stronger FDA.

“We have each been successful in educating about the need for more appropriated funds for FDA, and now we’ll be able to do an even more effective job,” said Steven Grossman, the Executive Director of the FDA Alliance who will be Deputy Executive Director for Government Relations and Communications in the Alliance for a Stronger FDA.

“The public health is in jeopardy because of FDA’s inability to conduct food and import inspections, and to have a modern IT system,” said Bill Hubbard, former FDA Associate Commissioner for Policy who will serve as public spokesperson for the merged organization. “We want the FDA to be capable of meeting the public’s expectations.’

FDA’s need for more resources was highlighted with the December 3 adoption by the FDA Science Board of a report by one of its subcommittee’s on the state of FDA science. The report said:

“The demands on the FDA have soared due to the extraordinary advance of scientific discoveries, the complexity of the new products and the claims submitted to FDA, the emergence of challenging safety problems, and the globalization of the industries that FDA regulates. The resources have not increased in proportion to the demands.

The result is that the scientific demands on the Agency far exceed its capacity to respond. This imbalance is imposing a significant risk to the integrity of the food, drug, cosmetic and device regulatory system, and hence the safety of the public.”

The new Alliance for a Stronger FDA will have 10 honorary co-chairs. These include:

  • Three former HHS Secretaries: Louis W. Sullivan, Donna E. Shalala, and Tommy G. Thompson, and

  • Seven former FDA Commissioners: Charles C. Edwards, Donald Kennedy, Arthur Hull Hayes, Jr., Frank E. Young, Jane E. Henney, Mark B. McClellan, and Lester M. Crawford.

Enter your e-mail address if you would like to receive "News Blasts" from NORD

ABOUT | CONTACT NORD

Since 1983, working toward the prevention, treatment, and cure of rare “orphan” diseases.

NORD Resource Guide

The NORD Resource Guide

The new and expanded NORD Resource Guide (5th edition) is now available. It lists more than 1,300 organizations helping people with rare disorders.

Medical Assistance Programs

NORD’s Medication Assistance Programs provide specific prescription drugs to people who cannot afford them. (Go to Article)

ABOUT NORD .|. CONTACT NORD .|. MEMBERSHIP .|. NORD MARKETPLACE .|. PRIVACY POLICY .|. DISCLAIMER .|. HOME
©2006 NORD - National Organization for Rare Disorders, Inc. All rights reserved.

Last modified Wednesday, April 30, 2008