Any serious medical condition brings difficult challenges for patients and caregivers, but for those facing rare diseases the toll is often much higher. Most rare diseases have no cure, so the art of living with a rare disease is an ongoing learning experience for patients and families. Issues include access to care, obtaining accurate information, a sense of isolation, treatment barriers, lack of funding for research to cure the disease and more.
The definition of a "rare" disease varies by country. In the U.S., a disease or disorder is defined as rare if it affects fewer than 200,000 Americans. But in Europe, a disease or disorder is defined as rare when it affects less than 1 in 2,000 people. Some 7,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. What unites all patients, however, is the fact they are dealing with a rare disease.
February 28, 2011 will mark the fourth international Rare Disease Day in which hundreds of patient organizations will hold awareness-raising activities based around the slogan “Rare but Equal.” Activities are planned across the United States, Canada and Europe, as well as in Australia, New Zealand, China, Japan, Russia, Georgia and Armenia.
The event is coordinated by EURORDIS (a patient-driven alliance of patient organizations in Europe representing more than 434 rare diseases) in collaboration with rare disease national alliances in countries worldwide.
“Many rare disease patients are treated unequally when seeking health care, social services, education, employment and in other aspects of everyday life. This is usually because their disease is not well understood by their health system and society at large,” Anja Helm, EURORDIS manager of relations with patient organizations, said. “These injustices are more or less serious depending on the disease and the place where the patient lives.”
The campaign for 2011 is focused on bringing more attention to the need to level the playing field in the area of rare diseases within and amongst countries. Rare Disease Day activities are open to everyone - individuals, patients, patient organizations, health professionals, researchers, drug developers and public health authorities. See the links at the end of this article to obtain information about activities in individual countries or for tools to organize an event or activity.
Resources:
National Organization for Rare Disorders (U.S.)
http://www.rarediseases.org/
Eurodis (Rare Diseases Europe)
http://www.eurordis.org/
Rare Disease Day
http://www.rarediseaseday.org/
Rare Disease Day - Participating countries and contacts
http://www.rarediseaseday.org/country/finder