This account is pending registration confirmation. Please click on the link within the confirmation email previously sent you to complete registration.
Need a new registration confirmation email? Click here
See Cramer's multi-million dollar portfolio for FREE and get his new book Get Rich Carefully! Learn More

NORD Launches Campaign To Educate State Legislators About Challenges Of Living With Rare Diseases

Patient Advocates and Supporters to Host State House Events for Rare Disease Day 2013

WASHINGTON, Dec. 11, 2012 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) has launched a nationwide campaign to help leaders of rare disease patient organizations – and those who support them – educate their state officials for Rare Disease Day 2013 ( Feb. 28, 2013).

(Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b)

The campaign is just one of many activities NORD will oversee as the national sponsor of Rare Disease Day in the U.S.  Rare Disease Day is observed globally each year on the last day of February.

"It's very important for officials at the state level to understand what it's like to live with a rare disease," said NORD President and CEO Peter L. Saltonstall.  "Key decisions affecting the lives of rare disease patients and their families on issues such as newborn screening and medical foods are made at the state level.  We want to ensure that those making these decisions have access to good information."

There are nearly 7,000 diseases considered rare in the U.S., affecting approximately 30 million Americans.  NORD will work with patient organizations, medical researchers and clinicians, companies developing treatments for rare diseases, and others to share key messages with legislators in states across the U.S.

The project is modeled on a successful Massachusetts State House Event organized by Blair Van Brunt of the Shwachman Diamond Syndrome Foundation and Sarah MacDonald of the Massachusetts Biotechnology Organization.  Van Brunt and MacDonald are working with NORD to develop resources for people interested in organizing similar events in other states.

NORD will publicize the project through the national Rare Disease Day website ( www.rarediseaseday.us).  Individuals interested in organizing events in their state may sign up through the website to receive guidance from NORD, as well as help in connecting with others in their state who have also expressed interest.

Van Brunt and MacDonald will participate with NORD in teleconference training sessions for individuals interested in hosting state house events, with the first of these scheduled for this week.  For information about hosting a state house event, go to the RareDiseaseDay.US website.    

SOURCE National Organization for Rare Disorders (NORD)

Copyright 2011 PR Newswire. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Select the service that is right for you!

COMPARE ALL SERVICES
Action Alerts PLUS
Try it NOW

Jim Cramer and Stephanie Link actively manage a real portfolio and reveal their money management tactics while giving advanced notice before every trade.

Product Features:
  • $2.5+ million portfolio
  • Large-cap and dividend focus
  • Intraday trade alerts from Cramer
  • Weekly roundups
TheStreet Quant Ratings
Try it NOW
Only $49.95/yr

Access the tool that DOMINATES the Russell 2000 and the S&P 500.

Product Features:
  • Buy, hold, or sell recommendations for over 4,300 stocks
  • Unlimited research reports on your favorite stocks
  • A custom stock screener
  • Upgrade/downgrade alerts
Stocks Under $10
Try it NOW

David Peltier, uncovers low dollar stocks with extraordinary upside potential that are flying under Wall Street's radar.

Product Features:
  • Model portfolio
  • Stocks trading below $10
  • Intraday trade alerts
  • Weekly roundups
Dividend Stock Advisor
Try it NOW

Jim Cramer's protege, David Peltier, identifies the best of breed dividend stocks that will pay a reliable AND significant income stream.

Product Features:
  • Diversified model portfolio of dividend stocks
  • Alerts when market news affect the portfolio
  • Bi-weekly updates with exact steps to take - BUY, HOLD, SELL
Real Money Pro
Try it NOW

All of Real Money, plus 15 more of Wall Street's sharpest minds delivering actionable trading ideas, a comprehensive look at the market, and fundamental and technical analysis.

Product Features:
  • Real Money + Doug Kass Plus 15 more Wall Street Pros
  • Intraday commentary & news
  • Ultra-actionable trading ideas
Options Profits
Try it NOW

Our options trading pros provide daily market commentary and over 100 monthly option trading ideas and strategies to help you become a well-seasoned trader.

Product Features:
  • 100+ monthly options trading ideas
  • Actionable options commentary & news
  • Real-time trading community
  • Options TV
To begin commenting right away, you can log in below using your Disqus, Facebook, Twitter, OpenID or Yahoo login credentials. Alternatively, you can post a comment as a "guest" just by entering an email address. Your use of the commenting tool is subject to multiple terms of service/use and privacy policies - see here for more details.
DOW 16,408.54 -16.31 -0.10%
S&P 500 1,864.85 +2.54 0.14%
NASDAQ 4,095.5160 +9.2910 0.23%

Brokerage Partners

Rates from Bankrate.com

  • Mortgage
  • Credit Cards
  • Auto
Advertising Partners

Free Newsletters from TheStreet

My Subscriptions:

After the Bell

Before the Bell

Booyah! Newsletter

Midday Bell

TheStreet Top 10 Stories

Winners & Losers

Register for Newsletters
Top Rated Stocks Top Rated Funds Top Rated ETFs