The Evolution of Rare Disease Day
Today, February 28th is Rare Disease Day and the evolution of rare disease day continues to amplify.
What Is Rare Disease Day?
The purpose of Rare Disease Day is to raise awareness for rare diseases.
Hopefully, increased awareness will improve access to treatment and medical representation for individuals with rare diseases and their families.
When Is Rare Disease Day?
Observance of Rare Disease Day is held on the last day of February.
How The Evolutions of Rare Disease Day Began
In 2008, The European Organization for Rare Diseases (EURORDIS) established the last day of February as a day to spread rare disease awareness.
In 2009 the National Organization for Rare Diseases (NORD) spearheaded 200 rare disease patient advocacy organizations in the United States and Rare Disease Day went global.
Since 2009, other global and national rare disease advocacy organizations, including Global Genes Project, have joined in the effort to promote Rare Disease Day.
Life with a rare disease can be frustrating, misunderstood, expensive and overwhelming.
With the evolutions of Rare Disease Day, I hope society takes a moment to reflect on the need for patients rights to health care, social services, treatments and orphan drugs.
Patient’s rights to health care need to apply to those patients who have a rare disease.
Most, people never think about living with a rare disease until it happens to them or one of their loved ones.
Unfortunately, it is difficult if not almost incomprehensible to understand life with a rare disease.
Sadly, rare diseases are frequently discounted, misconceived and overlooked until it becomes your world.
Please, help spread Rare Disease Day awareness so those of us with a rare disease can be heard.
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