Rare Disease Day 2019

February 28th is Rare Disease Day® .  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
 

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children.

Do you know which diseases are considered rare diseases by the NIH's Office of Rare Diseases Research? The following ovarian cancers are considered rare:

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

To learn more about any of those ovarian cancers just click on the name above. 

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. Rare Disease Day is sponsored in the U.S. by the NationalOrganization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.
 



 If you are on social media and have a rare disease you can use this template and show your stripes on this Thursday , February 28th. 

My stripes are rare. I have _____, a #raredisease. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}

I'll be sharing this blog post as a way to raise awareness. 

Dee
Every Day is a Blessing!

Today Feb 28th is Rare Disease Day

I wrote a piece about Rare Disease Day for the #gyncsm blog.  Here is some of the content from that post.

DAY by DAY,

HAND by HAND

 

The #gyncsm community has once again joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28th.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. 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. 

Do you know the gynecologic cancers that are considered rare diseases by the NIH's Office of Rare Diseases Research? They are:

Ovarian

Uterine,

Endometrial,

Fallopian tube,

GTD (Gestational Trophoblastic Disease),

Vaginal and

Vulvar cancers

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. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

Watch this Rare Disease video

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.

Dee
Every Day is a Blessing!