CHARLOTTE, NC: Do you know that every day of the year commemorates something? Some are more familiar than others of course, like Valentines’ Day, Memorial Day, or Mother’s Day. Certainly, National Popsicle Day or Baseball Trading Card Day is not going to gain much notoriety, if any at all. However there is one little known day that people should pay attention to, yet probably don’t even know it exists. Rare Disease Day is recognized worldwide on or near the last day of February each year, thereby making it fall on Saturday, February 29 in 2020.
The program went global in 2009 when the National Organization for Rare Disorders (NORD) mobilized 200 rare disease patient advocacy organizations in the United States while other groups in China, Australia, Taiwan, and Latin America also led efforts in their respective countries to coordinate activities and promote the day.
If you missed it up to now, don’t feel bad. So did most of the rest of the world. However, in light of current concerns over the recent spread of the Coronavirus, 2020 may be the year the international community sits up and takes notice on a much greater scale.
Last year, Rare Disease Day, along with the international events surrounding it, represented a major breakthrough in the focus toward finding a cure for ALS.
The ALS Ice Bucket Challenge in 2014 was a welcome shot of awareness, funding, and change of perspective in the perpetual battle to educate the public about the disease.
More than anything else, it brought hope to patients in the ALS community.
One great source for staying up-to-date with advances in the treatment of rare diseases is an online health news company called BioNews. The virtual workplace is a unique resource representing over 50 rare disease communities with patient columnists, news writers, editors and support staff in 18 countries and 30 states.
As one BioNews contributor pointed out:
“I soon began meeting and exchanging ideas with other patient columnists. Though we had diseases that differed in symptoms and treatments, we shared many of the same feelings. We each had to accept our diagnosis, adjust to our new normal, and learn to maintain a positive attitude despite our individual health challenges.”
Difficult as it may be to believe, an estimated 25 to 30 million Americans are living with a rare disease, or roughly the same number of people with Type 2 diabetes. Those numbers represent 8 percent of our total population.
Perhaps even more disheartening, is that rare diseases are often invisible afflictions because all too often patients are either misdiagnosed or under-diagnosed.
In 2019, Ari Zimran, MD, director of the Gaucher Clinic at Jerusalem’s Shaare Zedek Medical Center, pointed out that “Only 5 percent of the 7,000 known rare diseases have effective treatments.”
As a result of the growing awareness and need to fight rare diseases using a multiple attack approach rather than the previous method of a condition at a time, combined with renewed cooperation in data and research sharing, rare disease communities have discovered strength through unity for advocacy and funding.
Come February 29th when Rare Disease Day rolls around not to let it slip by unnoticed along with oddball observances like National Blue Suede Shoes Day or Caramel Covered Popcorn Day. All we seek is continued awareness as members of a large, supportive, vocal and progressive community — the rare disease community!
Regardless of what our individual rare disease may be, by finding strength in numbers, each of us can learn to live well as we continue the relentless challenges presented by these nasty obscure afflictions.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the ounder of The Magellan Travel Club (www.MagellanTravelClub.com)
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