A few MEBO Board members have received an email from the National Organization for Rare Disorders (NORD) informing us of the events that are to be held on Rare Disease Day, February 29, 2012. This is the message they extend to our community:
Have You Made Your Plans for Rare Disease Day 2012 Yet?
On February 29th, Rare Disease Day Partners across the U.S. and around the world will be hosting events, sharing stories, and showing support in other ways. National events include the NIH Rare Disease Day symposium on February 29 and the FDA Patient Advocacy Day on March 1.
NORD has chartered a bus to take patient advocates to the FDA event on March 1. Seating is limited. Patient organization representatives wishing to reserve a seat on the bus should write to amvallarino@rarediseases.org.
Here's a brief wrap-up of other plans that have been shared to date through the Rare Disease Day US website.
As noted on a previous post in this blog, Fifth International Rare Disease Day by EURORDIS, this event is an international one celebrated throughout the world.
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!
We hope you will have to opportunity to participate in any of these events. Have a great time if you do.
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2 comments:
Thank you for supporting Rare Disease Day! My child passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary http://www.lalsolace.org
Mary,
How tragic that you have lost your child to a rare genetic disease. I hope you find some solace in knowing that we are all united together to stand as a strong entity to promote research and find cures, one at a time if necessary.
María