Rare Disease Day 2013: Rare Disorders Without Borders

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Today is the sixth annual Rare Disease Day, an international advocacy day held on the last day of February — a rare day for rare people. On this day, millions of patients and their families from more than 60 countries and regions around the world will share their story to promote awareness of the challenges of living with a rare disease and bring widespread recognition of rare diseases as a global health challenge. This year’s slogan is “Rare Disorders without Borders”, which emphasizes the need for international cooperation.

Rare diseases without borders

Reaching out across borders

In the United States, a rare disease is any disease that affects less that 200,000 people. There are nearly 7,000 rare diseases, also called orphan diseases [1]. Most of these diseases are genetic, serious, chronic and debilitating.

For 2013, the slogan “Rare Disorders Without Borders” expresses the global solidarity of the rare disease community. Rare disease patients all over the world face many of the same medical, social and economic challenges. United, the global rare disease community is determined to build a better world for patients.

Reaching out across borders can help remind rare disease patients that they are not alone. Rare diseases affect over 250 million people worldwide.

Reaching out across borders can help researchers find common solutions. Indeed, advances in rare disease research have more chances of succeeding if they are pursued internationally when many teams of researchers from different countries work together. Financial resources for research will go further if pooled with other funding from various countries. This is the idea behind the International Rare Disease Research Consortium (IRDiRC), which has already rallied the support of 10 countries.

Rare Disease Day

Rare Disease Day was first launched by the European Organization for Rare Diseases (EURORDIS) in 2008. In 2009, EURORDIS asked National Organization for Rare Disorders (NORD), to be its partner and sponsor Rare Disease Day in the United States. Partnership has expanded beyond the U.S. and Europe, and in 2012 more than 60 countries around the world participated in the event.

This year, Rare Disease Day has special significance in the U.S. because it is the 30th anniversary of the Orphan Drug Act, which provides financial incentives to encourage companies to develop treatments for rare diseases, and of the National Organization for Rare Disorders (NORD), which was established by patient advocates in 1983.

As part of this year’s Rare Disease Day campaign, EURORDIS has released an official Rare Disease Day video, which mixes animation with live cinematography. Over 31,000 people have watched the Rare Disease Day video in 12 languages. Check it out below.

Today and tomorrow (Friday, March 1st, 2013), the National Institutes of Health (NIH) will celebrate Rare Disease Day with a 2-day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance.

In addition to a number of scheduled talks, there will be posters and exhibits from many groups relevant to the rare diseases research community. For more information, see Rare Disease Day at the NIH’s Office of Rare Diseases Research (ORDR).

References

  1. NORD’s 2012 Report to the Communities. National Organization for Rare Disorders. 2012.
About the Author

Walter Jessen is a senior writer for Highlight HEALTH Media.