Rare Disease Day 2024

 

 

February 29th is Rare Disease Day®.

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. Worldwide 300 million people are living with rare diseases.  To learn more about rare diseases and to read stories of those living with rare diseases visit the Rare Disease Day website at https://www.rarediseaseday.org/ .

These gynecologic cancers,

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

Uterine Carcinosarcoma
Uterine sarcoma
Vaginal cancer

Vulvar cancer

Fallopian tube cancer

Gynandroblastoma

Endometrial stromal sarcoma

Gestational trophoblastic tumor 

Leiomyosarcoma 

are considered RARE by NIH's Genetic and Rare Diseases Information Center. 

In the US, diseases that affect less than 200,000 people are considered rare.In the EU a disease is rare if it affects no more than 50 per 100,000 people.  In 2023, roughly 19,710 women in the US were be diagnosed with Ovarian cancer. Ovarian Cancer is a rare disease!

Why is Rare Disease Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs are being modified to better understand rare diseases. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find treatment centers and emotional support at diagnosis.Raising awareness through this day is important in the US and globally.

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website . 

Do you have a rare disease? What would you like others to know about your disease? 

Dee

Every Day is a Blessing!

 

 

Rare Disease Day 2022

February 28th is Rare Disease Day®. 

Ovarian Cancer is a Rare Disease!

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. 

These gynecologic cancers,

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

Uterine Carcinosarcoma
Uterine sarcoma
Vaginal cancer

Vulvar cancer

Fallopian tube cancer

Gynandroblastoma

Endometrial stromal sarcoma

Gestational trophoblastic tumor 

Leiomyosarcoma 

are considered RARE by NIH's Genetic and Rare Diseases Information Center. In the US, diseases that affect less than 200,000 people are considered rare. In 2022, roughly 19,880 women in the US will be diagnosed with Ovarian cancer. 

Why is this Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs need to be changed so these trials can take place. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find emotional support. This is where online communities are helpful. 

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website . 

Do you have a rare disease? What would you like others to know about your disease? 

Dee

Every Day is a Blessing!

 

 

 

 

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!