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 Danbury, CT. —– The leading advocacy groups for Americans and Europeans with rare diseases—the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)—have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.  The intent is to increase global awareness, promote research and the development of new treatments, and provide advocacy for more compassionate public policies.  

“Collaboration between our two organizations will make both stronger and more effective in representing our constituents,” said Peter L. Saltonstall, President and CEO of NORD.  “Since patients with rare diseases may be located anywhere in the world, international collaboration to support and advance their needs is extremely important.  This strategic partnership will help us address issues and challenges that are essentially the same on both sides of the ocean.”   

Yann Le Cam, Chief Executive Officer of EURORDIS, noted that “EURORDIS and NORD are in a unique position to promote solidarity between Europe and the US and help bridge the gap between those regions of the world that have progressed more than others in their strategies to address the needs of people living with rare diseases.  We can be key facilitators to promote the common interest of people with rare diseases and to empower patient advocates all over the world.” 

As part of their strategic partnership, EURORDIS and NORD will: 

  • Co-organize an annual global Rare Disease Day
  • Establish common positions on key advocacy priorities
  • Play a pivotal role in the International Conferences for Rare Diseases and Orphan Drugs (ICORD) to help expand the rare disease movement
  • Collaborate in the development of international web media and social networking information and communication services
  • Implement an international mentoring project for rare disease patient organizations
  • Coordinate more closely activities to enhance relations with the pharmaceutical and biotechnology industry

EURORDIS and NORD will kick off their collaboration with a joint public policy advocacy blog and shared online communities.   

This collaboration among patient advocacy leaders mirrors other recent developments.  The U.S. Food and Drug Administration (FDA) and its counterpart in Europe, the European Medicines Agency (EMEA), have announced a collaborative effort to ensure appropriate conduct of clinical trials.  The two agencies have also adopted a common application for “orphan” products—products being developed as treatments for rare diseases.   

A disease is considered rare in the U.S. if it affects fewer than 200,000 Americans.  Almost 30 million or nearly one in 10 Americans have rare diseases.  In the European Union, a disease is considered rare if it affects fewer than one in 2,000 people.  There are 30 million Europeans with rare diseases.      

NORD, established in 1983, and EURORDIS, founded in 1997, are both non-governmental, patient-driven alliances of patient organizations and individuals dedicated to improving the lives of people with rare diseases.  The NORD website is at www.rarediseases.org.  The EURORDIS website is at www.eurordis.org.    

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Contact:

Mary Dunkle

mdunkle@rarediseases.org

(203) 744-0100 (office) or (203) 482-9934 (cell)

October 1, 2009

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