Monday, January 03, 2011

NORD and the Pepsi Challenge - help rare disorders!

Below is some information I'm passing along in hopes that readers will support the effort.

NORD is in this month's Pepsi Refresh Challenge Project and needs your help! In this project, organizations win grants by receiving the most votes in their category. NORD has proposed an idea that has been accepted by Pepsi for the $50,000 category. It is based on the belief that knowledge is power, and that rare disease patients and their families need information to be their own best advocates.

Specifically, NORD's idea is to update and expand the Rare Disease Database, a unique online resource that provides reports in patient-friendly language on more than 1,200 rare diseases.

You can read about NORD's idea and sign up to vote on the Pepsi Refresh website. Every individual is allowed to vote once a day. During the month of January, please vote every day in support of NORD's idea. Please also share this link with your email contacts and Facebook friends. If you would like to receive daily or weekly reminders from NORD to vote, sign up here.

The rare disease reports provide information on symptoms, causes, treatments, and clinical trials, as well as links to patient organizations and other sources of help. NORD offers the reports free to individual patients and families through its website or via a tollfree phone number. Often, those seeking reports have just gotten a diagnosis so it's especially important for them to have access to accurate, up-to-date information in language they can understand.

At the end of the month, the 10 ideas receiving the most votes will each be awarded $50,000 grants. This would allow NORD to add several of the most requested topics to its database, in addition to updating several of the most requested current reports.

Please vote daily through the month of January in support of this project to empower rare disease patients and families, and please share the link with your friends and colleagues.

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