Tomorrow, February 28th is International Rare Disease Day. The objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives. It is held the last day of February every year. It was started in 2008 – a leap year, (a rare occurrence.) Every year has a different theme. This year’s theme is CARE, “Let’s join together for better care!” A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
Patients, families, friends, caregivers, scientists, physicians, researchers and health care providers come together to help raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families all across the world.
My nephew Mikey suffers from one of these rare diseases. His is called, Mitochondrial Disease. Tonight my sister is with some friends that she has met through this organization. They are out spreading the word about Rare Diseases.
According to The National Institute of Health,
There are about 7000 rare diseases identified in the United States. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives.
I am sure that every bit of recognition is a step in the right direction – so share and help to spread the awareness.
Tagged: join together for better care, Mito, mitochondrial disease, national institute of health, NIH, Rare disease day, rare diseases
Dear Ms. Sinclair, Thanks so much for sharing this. Both of Ella brother’s have rare neurological birth defects that are “sister” conditions. Owen had brain surgery for a Chiari Malformation, while Ian has syringomyelia. It is hard to get the word out and I never knew about this day! Thanks so, so much!!! Jessica Graffunder
Hi Jessica, I wasn’t aware of this day until very recently. I did not know about Owen and Ian. Obviously there is a need for the day, as I hadn’t heard of either of those and many people aren’t aware of what my nephew has either. Hope people continue to spread the word!