Monday, February 16, 2015

Day by Day , Hand in Hand : Rare Disease Day February 28, 2015

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 ResearchThey are:

Fallopian tube,
GTD (Gestational Trophoblastic Disease),
Vaginal and
Vulvar cancers

There are a number of tweet chats that are being held this week that are discussing rare diseases. Feel free to join in the discussions. (Thank you Stephanie Fischer, @SDFatPhRMA, for compiling these.)

·         Tuesday, February 17th, at 1-2pm ET: NORD & Dr. Richard Besser of ABC News are co-hosting a chat on Conquering Rare Disease.
o   Hashtag: #abcDRBchat
o   Handles to watch: @RareDiseases, @RareDayUS, @abcdrbchat & @DrRichardBesser

·         Tuesday, February 17th, 8-9pm ET: Treatment Diaries and Give Rare will co-host a tweetchat on rare disease collaboration.
o   Hashtag: #TreatDiariesChat
o   Handles to watch: @treatdiaries, @giverare & @keeganj

·         Wednesday, February 18th at 1pm ET: Isabel Jordan will moderate a tweetchat on rare disease for the Health Care Social Media Canada community.
o   Hashtag: #hcsmca
o   Handles to watch: @seastarbatita & @hcsmca

·         Wednesday, February 18th, at 8pm ET: The Massachusetts Biotechnology Council & PhRMA will cohost a tweetchat on the State of Rare Disease Research.
o   Hashtag: #Impact2020
o   Handles to watc: @MassBio, @SDFatPhRMA, @AARDATweets & @NFincNE

·         Thursday, February 19th, at 2pm ET: Global Genes & WEGO Health will host a World Rare Disease Day Tweetchat.
o   Hashtags: #RARETalk & #hachat
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 2015 video

For more information about Rare Disease Day in the U.S., go to  For information about global activities, go to  To search for information about rare diseases, visit NORD’s website,



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