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 1,200 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 1,200 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.

 

NORD Corporate Council

The NORD Corporate Council is a select group of leading companies committed to helping people with orphan diseases. The council provides a unique opportunity for interaction with the rare disease community, including patient advocacy organizations, and enables companies to discuss emerging trends with top experts in the worldwide orphan disease effort. Membership supports NORD's commitment to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and service.

Benefits of membership include:

  • Semi-annual council meetings with briefings on national and international health policy issues, legislative and regulatory initiatives, advancements in biomedical research, treatment innovation, and the commercialization of orphan products.

  • Introduction and access to NORD's Medical Advisory Committee, Board of Directors, National and Associate Member Organizations, and senior staff, as well as key policymakers, government officials, and industry experts.

  • Forum to promote awareness, innovation, access and sustainability of treatments for rare diseases and to facilitate the direct exchange of views with patient advocates.

  • Medical and scientific presentations from key opinion leaders.

  • Timely news alerts highlighting important issues impacting orphan drugs, biologics and devices.

  • Networking with other companies and health-related industries.

  • Exploring new partnership opportunities for patient programs and services.

  • Special recognition in the NORD newsletter, website, and council materials.

Annual Membership Levels

Founder's Circle $25,000*
  • Up to five company representatives may attend council meetings.
  • Access to a new members-only section on the NORD website.
  • Media announcement & listing of company in NORD publications.
Patron's Circle $10,000*
  • Up to three corporate personnel may attend Council Meetings.
  • Access to a new members-only section on the NORD website.
  • Listing of company in NORD publications.
Associate Circle $5,000*
  • For small companies with no market products, this category enables one corporate representative to attend council meetings.
  • Access to a new members-only section on the NORD website.
  • Listing of company in NORD publications.

*Indicates an annual contribution

Past NORD Corporate Council Meeting Topics

  • Partnering and Licensing and Shortening Drug Development Time: November 12, 2004, New York City, Patti Engel, President, Engage Health; Ken Greathouse, President, Glenridge Pharmaceuticals

  • Finding the Funding: May 17, 2004, Washington, DC, Steven Grossman, JD, President, HPS Group

  • Patients and Pharmaceutical Companies: Partnerships for Access and Reimbursement: November 12, 2003, New York City, Steven Grossman, JD, President HPS Group LLC and Mark Krueger, MPH, President, Mark Krueger & Associates, Inc.

  • FDA 2003: Agency in Transition: May 19, 2003, Washington, DC, Del Stagg, PhD., Allergan, Inc. and Abbey Meyers, NORD, President, chaired this meeting.

  • Developing Therapies for Rare Diseases: How Rare is Rare and How Do We Find Those Patients?: March 22, 2002, New York City, Ellen Franks & Marty Joyce, Stratex, Inc. chaired this meeting.

  • Development of Consensus Conferences and Distribution of Conference Proceedings: Monday, May 6, 2002, Washington, D.C., Barbara Wuebbels, Ucyclyd Pharma, chaired this meeting.

  • Navigating FDA Advisory Committee Meetings: May 21, 2001 Washington, DC: Abbey Meyers, NORD President, chaired this meeting.

  • Insurance Reimbursement Issues for Orphan Products: November 17, 2000, New York City Patti Engel, Vice President of Marketing, Orphan Medical, Inc, chaired this meeting.

  • Earlier Diagnosis and Treatment of Orphan Diseases: May 8, 2000, Washington DC Ken Mehrling, Chief Operating Officer, Sigma-Tau Pharmaceuticals, Inc. chaired this meeting.

  • Pharmacoeconomics: Demonstrating the Value of Orphan Drugs: April 5, 2000, New York City Greg Brooks, Vice President Global Botoxâ, Allergan, Inc., chaired this meeting.

back to Corporate Council Homepage

ABOUT NORD .|. CONTACT NORD .|. MEMBERSHIP .|. PRIVACY POLICY .|. DISCLAIMER .|. HOME
©2009 NORD - National Organization for Rare Disorders, Inc. All rights reserved.

Last modified Wednesday, January 20, 2010