SP? OCD? ASD? One ME!! Supports Rare Disease Day® (and eating disorder awareness) and Joins Global Movement to Raise Important Awareness for Rare Diseases
My corner of the internet, Next to the ATM—March 1, 2016—Wiggle Worm has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 29. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.
In real life, I am hosting an event at my school to spread awareness about Rare Diseases! Rare Disease Day is on the rarest day of the year this year, February 29th, and we are celebrating on March 1st. I am really excited…and I probably need to start thinking about what I am going to say, because I tend to think I will come up with what to say on the spot and realize about ten minutes in advance that I should probably write it down and since ten minutes before I will be finishing up an exam, it will be a little bit important that I write it down more than 10 minutes in advance (I know, I should be more responsible, but distrAction is my modus operandum…that and making messes…yes there is homemade applesauce all over the counter in my kitchen…I would have cleaned it up but then I checked my email and sometimes getting out the door can be a challenge).
Creating a community of mutual respect, everyone has their own unique challenges and things that make them tick. People with rare disorders are no different, and many of them feel rejected by the medical community when they are running the marathon of finding a diagnosis and treatment.
Y’all know I don’t post identifiers on here, so if you are interested in attending the event and need more information, do not hesitate to contact me.
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.
Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, the largest and leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases.
For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org). To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.
Jennifer Huron, NORD, 203-744-0100, firstname.lastname@example.org
Also, to give credit where credit is due, I got this template in my partner packet…so you can probably tell which words are my own and which were maybe not my words…also, I’m pretty sure take action day was supposed to mean talking to government people about creating new laws about eating disorders, but I really think that the government should stay out of things that are more personal and let people figure things out for themselves. Laws like not murdering people=very important…Laws about a lot of other things: kinda ridiculous. Just let people be people.