Tag Archive for: Rare Disease Day

Spotlight On: Rare Disease Day 2019

Today is Rare Disease Day, an initiative first started by EURORDIS (The European Organization for Rare Disorders) in Europe on February 29, 2008 to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The United States joined the following year alongside the EURORDIS sister organization, The National Organization for Rare Disorders (NORD).

A rare disease, also known as an orphan disease, is any disease, disorder, illness, or condition that affects fewer than 200,000 people in the United States. Although the disease may be rare, patients and families share a common struggle. For more facts and statistics about rare diseases, please check out NORD’s Rare Disease Fact Sheet.

Theme

This year’s global theme ‘Bridging Health and Social Care’. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. In the United States, the official symbol of rare diseases is the zebra for its black and white stripes, which are central to its uniqueness.

Get Involved

Rare Disease Day is for every, and below are some ways to participate:

  • Share your own story of life with a rare disease
  • Check out different graphics to post on your social media accounts
  • Share posts from other people and organizations to increase awareness
  • Join in on a local Rare Disease Day event
  • Raise awareness on social media (#ShowYourRare, #ShowYourStripes, #RareDiseaseDay, #Pledge4Rare, #CareForRare)
  • Find out more here

Tag Archive for: Rare Disease Day

Empowered #patientchat – February 22nd

In honor of Rare Disease Day, National Institutes of Health (NIH) and National Center for Advancing Translational Sciences (NCATS) host a special tweetchat (#NIHchat) each year to raise awareness about rare diseases and their impact on patients’ lives. We hope you’ll chat along with us as #patientchat joins the #NIHchat on Friday, February 22nd.

We will not be hosting our own chat during this time, but instead invite you to join the #NIHchat as we will be tweeting from @patientchat and @power4patients. Learn more about NIH’s Rare Disease Day activities here.

I'll be at the #NIHchat with @patientchat on Fri 2/22 1pm ET. Join me! Click To Tweet