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!