The NORD Corporate Council was established to advise, consult and work with leaders of the orphan disease community to promote the interchange of information among voluntary health agencies, health-related industries and regulatory agencies, and to facilitate dialogue about research and development of treatments for rare diseases. A specified corporate contribution to NORD will establish annual membership on the Council including the following benefits:

• Recognition of Corporate Council members in NORD's newsletter, Orphan Disease Update, web site www.rarediseases.org and other materials.
  
  
• An ongoing advisory role to the NORD Board and Staff.
  
  
• Medical and scientific briefings from orphan disease experts and leaders of NORD's member agencies.
  
  
• Timely bulletins describing important issues of relevance to the field of orphan diseases, orphan drugs, and orphan devices in the United States as well as Europe and Asia.
  
  
• Semi-annual Corporate Council meetings with NORD's Board (leaders of national voluntary health agencies) and Staff, with briefings about national and international orphan disease activities, discussions regarding fields of mutual interest to the voluntary health sector and health related industries (e.g., pharmaceutical reimbursement, pharmacoeconomics, patient organization initiatives, etc.), public policy dialogue, and plans for future activities.
  
  
• Opportunities to interact with other companies that are involved with the orphan disease community.
  
  
• Opportunities for direct exchange of views with major leaders of the voluntary health sector and NORD staff.
  
  
• Opportunities to develop partnerships, sponsorships and collaborations with NORD and its member organizations.

This is a unique opportunity for interaction with the patient community through NORD's 130 voluntary health agency members, and to offer your expertise to NORD's leaders. The Council will enable industry leaders to provide input to, and learn, from the respected leaders of the worldwide orphan disease effort, and to support NORD's mission of finding the causes, treatments, and cures for rare "orphan diseases."

*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.
  

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