Millions around the world suffer from rare diseases that attract little attention in the public arena. On February 28, those who endure these often-neglected illnesses will take center stage in a global observation of Worldwide Rare Disease Day.
The European Rare Disease Organization, or EURORDIS, first established the special day in 2008 as a way to draw community attention to these diseases. In the following year, the organization launched a partnership with the U.S.-based National Organization for Rare Disorders (NORD). The goal of the collaboration was to encourage support for effective government policies, research funding, new treatments, quality care and public information efforts on the issue of rare diseases.
Since then, many other countries have joined the effort to raise awareness of these illnesses. In 2012, more than 60 nations from around the world were involved in promoting Rare Disease Day activities. The event’s organizers believe their message also is reaching many more people today because of the expansion of social media sites such as Facebook and Twitter. The 2013 Rare Disease Day slogan, “Rare Disorders Without Borders,” reflects this global endeavor.
Any illness that affects a small portion of the population is considered a rare disease, also known as an orphan disease. In the United States, any disease that afflicts 200,000 people or less is given this designation. About 30 million Americans are affected by nearly 7,000 of these rare diseases. In Europe, more than 30 million people are believed to be suffering from these diseases. When looking at the MENA (Middle East and North Africa) region we see that the Arab countries contribute approximately USD 30 billion per year to their populations’ suffering from hereditary genetic diseases, according to the Arab Institute of Genomic Disease in Dubai. Furthermore the CTGA database had indicated the presence of 774 phenotype entries in Arab patients caused mainly by recessive genes, as of October 2006.
This year, NORD organizers are encouraging supporters to plan events at state government sites to educate legislators about the effort, as participants have done successfully for the past two years in Massachusetts. In Washington D.C., two days of exhibits, speakers and other public activities are planned at the National Institute of Health. A Legislative Conference and Lobby Day also will be held, bringing together about 200 health advocates at the National Press Club.
In an effort to honor those who have helped rare disease victims and their families, Rare Disease Day organizers also are asking people to nominate researchers to the Rare Disease Research Hall of Fame. In addition, a number of schools and other organizations around the country are planning special activities. Those who can’t attend an event in person can participate by submitting their pictures to “Handprints Across America,” an online photo gallery of people who support a greater public focus on rare diseases.
The sixth international event will involve organizations in 24 European countries as well as participants in nations such as China, Japan, Australia and New Zealand. European organizers also are encouraging supporters to upload photos in which they raise their hands in solidarity with rare disease sufferers.
A ‘Rare Disease Day’ is also being organized in Bahrain on the 26th of February at the Centre for Molecular Medicine, in Al Jawhara University. During this even family physicians, patient organizations and also specialists from different medical fields will come together to discuss various related topics, including the impact rare diseases have on societies.