Category: "Awareness"

Rare Disease Day 2012

Link: http://rarediseaseday.us/

Somehow slipped my mind that this year would be a leap year.

Guess that makes it appropriate that Rare Disease Day will be on February 29th this year.

About Rare Disease Day

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.

Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.

This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org.

What is a Rare Disease?

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. For 2012, our focus is solidarity.

Swinging for Sleep Campaign With Nicole Jeray

Link: https://www.narcolepsynetwork.org/get-involved/swinging-for-sleep/

Narcolepsy Network has teamed up with long time loyal Narcolepsy Network member and golf superstar, Nicole Jeray, LPGA Touring Pro. Narcolepsy Network is soliciting your support for a unique fundraising endeavor, “Swinging for Sleep”.

Jazz Pharmaceuticals will donate $25 for every birdie that Nicole makes on tour. And, you can pledge any amount you wish to also donate for every birdie that Nicole makes on tour. Or, just make a one-time donation of your choosing.

Personally, I've pledged $0.50 for each birdie.... :cool: