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! 

February 28, 2014 - Rare Disease Day

Did you know that some gynecologic cancers are considered rare diseases? The NIH's Office of Rare Diseases Research considers Ovarian, Uterine, Endometrial, Fallopian tube, GTD (Gestational Trophoblastic Disease), Vaginal and Vulvar cancers as rare diseases.

Because of those designations as rare diseases #gyncsm has joined with over 190 organizations through out the world to become a Friend of Rare Disease Day. Rare Disease Day is February 28, 2014. This year's theme is Care: Join Together for Better Care . The rare disease website says "Considering rare diseases from an international perspective is also essential to send a strong message of hope to the millions of rare disease patients and families throughout the world who can break their isolation through a vast, united international network of solidarity. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need."

To see the face of Rare Disease Day please watch this video.



We will be using @gyncsm and #gyncsm to help spread the word about Rare Disease Day.

For more information just click on the logo to the right to be taken to the Rare Disease Day web page.


Dee
Co-moderator