Presents LEAP Sessions
A Benefit Concert for MarbleRoad on Rare Disease Day
Wednesday, February 29, 2012
Doors at 7:30 - Show 8pm to 11pm
Rare Disease Day is an annual, awareness-raising event coordinated by EURORDIS at the international level and by National Alliances of Patient Organizations at the national level.
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances. On this day, hundreds of patient organizations from more than 40 countries worldwide are organizing awareness raising activities converging around the slogan "Rare but strong together".
MarbleRoad is a non-profit, 501(c)(3) public charity incorporated in Washington, DC in September 2010. The mission of MarbleRoad is to connect people who have complex illnesses with the resources they need to help them improve their lives.
A complex illness can be persistent and substantially disabling or life threatening, and requires treatments and services across a variety of domains of care to ensure the best possible outcomes for each unique patient. MarbleRoad focuses on rare or undiagnosed diseases and the needs of community health center patients who seek specialty care services not offered by their primary care providers.
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease... Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
in Columbia Heights (about 4 blocks from the Metro)
With Performances By:
- Jonny Grave & the Tombstones @JonnyGrave - jonnygrave.com
- Benny @BennytheBand - bennytheband.com
- Nelly Kate @NellyKate - nellykate.net
- Linsay Deming of SweetBread Jim's - sweetbreadjims.com
- SoftSpot @TheRealSoftSpot - therealsoftspot.tumblr.com
- Caged Animals @CagedAnimals - cagedanimals.net
JOIN US, BOOGIE DOWN, AND TAKE A LEAP FOR COMPLEX ILLNESS
ON RARE DISEASE DAY 2012!
See also the Facebook page for this event: http://www.facebook.com/events/294374337281548/
Tweet about it (sample tweet - just cut/paste):
Join @MarbleRoad @IndieMatch at LEAP Sessions #DC @Acre121 on Feb 29 2012 #RareDisease Day http://bit.ly/LEAPsessions “Rare but strong together!”
Tickets will be $20 at the door [cash or credit], but please purchase tickets in advance!