Rare Disease Day Feb 29, 2020

"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."


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

Ovarian

Uterine, including Sarcomas

Endometrial,

Fallopian tube,

GTD (Gestational Trophoblastic Disease),

Vaginal 

Vulvar 

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

Additional Rare Disease Day Information

Rare Disease Day® is February 28th! 
We have already provided some information about Rare Disease Day® in a recent blog post.   But we wanted to share with you two additional Rare Disease Day chats that will be occurring this week along with some twitter handles to watch. Thanks again to Stephanie Fischer (@SDFatPhRMA) for providing this important information. 

Wednesday, February 25^th, 2:30-3:30pm ET: NIH will host a tweetchat to raise awareness of rare disease and promote Rare Disease Day at NIH. NIH Director Dr. Francis Collins will participate as will Dr. John Ferguson, Medical Consultant, Office of Rare Disease Research in the National Center for Advancing Translational Sciences (NCATS).

·         Hashtag: #NIHchat
·         Handles to watch: @NIH, @NIHDirector and @NCATS_NIH_GOV

There is also a    Rare Disease Day at the National Institutes of Health: February 27^th in Bethesda, MD – and available by WEBCAST.

Thursday, February 26^th, 1-2pm ET: The Center for Jewish Genetics and Global Genes will host a tweetchat to raise awareness of rare diseases.

·         Hashtag: #RareDiseaseChat

·         Handles to watch: @JewishGenetics, @GlobalGenes & @BYMRKH

Here are some Rare Disease twitter handles to watch this week:
·         NORD: @RareDiseases
·         Global Genes: @GlobalGenes
·         Rare Disease Day US: @RareDayUS
·         World Rare Disease Day: @RareDiseaseDay
·         Rare Diseases Europe: @eurordis
·         Coordination of Rare Diseases at Sanford (hosting an event on Friday): @SanfordCoRDS

Dee
Every Day is a Blessing!