Two major advocacy groups for people with rare diseases — the National Organization for Rare Disorders (NORD, www.rarediseases.org) in the United States and the European Organization for Rare Diseases (EURORDIS, www.eurordis.org) — have joined forces to work on behalf of rare disease patients and their families in both regions. These groups are nongovernmental (NGO), patient-driven alliances of patient organizations and individuals dedicated to improving the lives of people with rare diseases.

This collaboration follows an announcement by the US FDA and the EMEA of a collaborative effort to ensure appropriate conduct of clinical trials and adoption of a common application for orphan drug products — those being developed to treat rare diseases. The intent is to increase global awareness, promote research and the development of new treatments, and provide advocacy for more compassionate public policies, according to press releases from the NGOs.

A disease is considered rare in the United States if it affects <200,000 Americans. Almost 30 million (nearly one in 10) Americans have a rare disease. 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.