Rare Disease Day is February 28

Posted by Carolyn Martin on February 22nd, 2017 Posted in: Health Literacy, Health Observances

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More than 6,500 rare diseases exists at this time and less than 5 percent have a treatment. In the United States a rare disease is one that affects less than 200,000 people. However, roughly 25 to 30 million Americans are affected by a rare disease. Many of these diseases:

• May involve chronic illness, disability, and often premature death
• Often have no treatment or not very effective treatment
• Are frequently not diagnosed correctly
• Are often very complex
• Are often caused by changes in genes

The theme for this year’s Rare Disease Day is “Research” with the slogan, “With research, possibilities are limitless”.  Research is key to find treatments and possible cures as well as improving the care of those with a rare disease. The philosophy of NIH’s National Center for Advancing Translational Science (NCATS) is to work closely with families, caregivers, advocates and patients in order to make greater advancements in rare disease research. February 28 is a time to recognize the advancements being made, bring awareness, share personal stories, and encourage dialogue among researchers, advocates, families and others.

Learn more about Rare Disease Day and how you and your organization can get involved at http://www.rarediseaseday.org/

Learn more about rare diseases through a number of websites:

• MedlinePlus Rare Disease health topic https://medlineplus.gov/rarediseases.html
• Genetics Home Reference https://ghr.nlm.nih.gov/
• NORD National Organization for Rare Disorders https://rarediseases.org/
• Join the NCATS live event and webinar on February 27 starting at 5:30am Pacific Time https://ncats.nih.gov/rdd