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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
Add a Comment3 Comments
Thank you for supporting Rare Disease Day! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary http://www.lalsolace.org
February 22, 2012 - 10:37amThis Comment
Thanks John! I've been in Inspire's Leukemia Group for some time, and have found your site very valuable. I encourage readers to check out the article link you provided as well as the Inspire site. Of course, I also encourage people to join the Groups on EmpowHER too. :-)
Knowledge is power, but collective and shared knowledge is even more powerful for patients, especially those of us living with a rare disease.
February 21, 2011 - 11:51amThis Comment
Pat,
Thanks for this information. I'd like to share with you a compilation that Inspire released this morning in recognition of Rare Disease Day. Go to http://bit.ly/g6iPZq to download pdf of the free report.
John Novack
February 21, 2011 - 11:45amDirector of Communications
Inspire
This Comment