Embracing the Future: NORD's New Logo

NORD will be introducing a new logo and a redesigned website over the next few months. Our fundamental mission remains the same---to improve the lives of all people affected by rare diseases through education, advocacy, research, and patient services. Our new website will include many features not available on the current one. These changes are being made to help our diverse audience navigate easily and quickly to important information, news, and resources.

Bicyclists ride from Pittsburgh to Washington DC

On June 24-29, 14 bicyclists will ride from Pittsburgh to Washington DC to raise awareness of all rare diseases and encourage funding for research. The ride is being sponsored by the Vasculitis Foundation, a NORD Member Organization. The riders will deliver a petition to legislative staff signed by hundreds of rare disease patients, caregivers, and medical specialists in support of increased funding for rare disease research. Details.

CNN Features Family's Struggle Against Dystonia

In recent days, CNN has aired a very moving feature on the Staab family's odyssey in search of a cure for dystonia. The Dystonia Medical Research Foundation, a member of NORD, provides information on this little-known disorder as well as information about resources for those affected. View the CNN video.

NORD Summit Provides Call to Action

Now is the time for the rare disease community to have a clear and focused agenda for action, speakers Tommy Thompson, Francis Collins, Janet Woodcock and others emphasized at the NORD Partners in Progress Summit in Washington, DC, on May 14th. With healthcare reform on the legislative agenda for this summer, the Summit focused on innovation in product development and ensuring patient access to treatments. A capacity crowd of 300 people registered for the Summit, which was held at the historic Willard Intercontinental Hotel. View Summit presentations. Watch for news and updates related to Summit next steps.

Summit speakers Sol Barer, PhD, of Celgene and Francis Collins, MD, Moderator David Kessler, MD, JD, and Frank Sasinowski of NORD Board

Summit speakers Emil Kakkis, MD, PhD, of Kakkis EveryLife Foundation, David Meeker, MD, of Genzyme, and Gail Javitt, JD, MPH, of Johns Hopkins University Genetics and Public Policy Center

AT THE BIO ANNUAL CONVENTION 2009

Ashley and Carol Kurpiel stopped by the NORD booth at the BIO Annual Convention 2009 this week to say hello. The family's experience with fibrodysplasia ossificans progressiva was featured on Discovery Health's Mystery Diagnosis episode for World Rare Disease Day 2009.

Baucus/Conrad CER Bill Introduced

Senate Finance Committee Chair Max Baucus (D-Mont) and Senate Budget Committee Chair Kent Conrad (D-ND) have introduced new legislation to result in studies comparing the effectiveness of different treatments for the same disease. Read more.

Rare Disease Day Research Hall of Fame

Laird Jackson, MD, had been searching for the illusive Cornelia de Lange syndrome gene for more than two decades when he heard about Ian Krantz, MD, at the Children's Hospital of Philadelphia. Read about Drs. Jackson and Krantz, and the other outstanding scientists nominated to the 2009 Rare Disease Day Research Hall of Fame.

NORD President Praises New NIH Initiative

NORD President and CEO Peter L. Saltonstall today praised the establishment of a new initiative at the National Institutes of Health (NIH) to encourage the development of treatments for rare and neglected diseases.

"There are nearly 7,000 rare diseases and only about 200 of them have an FDA-approved therapy," Saltonstall said. "Every day, our staff members assist patients and families whose lives are being impacted in very significant ways by the fact that there is no treatment for the diseases affecting them." Read the Press Release.

News From NORD's Washington Office

NORD is a member of coalitions currently actively engaged in providing advocacy on the following fronts: eliminating the lifetime and annual caps on health insurance benefits, eliminating the two-year waiting period for Medicare, and eliminating pre-existing condition clauses that limit access to affordable healthcare coverage for people with rare chronic conditions. Read letters submitted to Senate Finance Committee Chairman and Ranking Member. Lifetime Caps Coalition Letter, and End Medicare Two-Year Wait Letter.

Letter to Senator Grassley and Letter to Senator Baucus.

RFA Posted for Pediatric Device Consortia Grant Program

Funding is available to support pediatric medical device development through a new Pediatric Device Consortia Grant Program. NORD provided advocacy for this program, in partnership with the American Academy of Pediatrics, American Thoracic Society, Elizabeth Glaser Pediatric AIDS Foundation. Read about the program. Read letters to the House and Senate supporting funding.

Genzyme Runners Raise Money for NORD

Employees of the Genzyme Corporation chose NORD as their charity to benefit again this year through their participation in the Boston Marathon. To read about "Team Genzyme", or make a donation in support of their run, click here.

We Salute Our Rare Disease Day Partners!

More than 220 organizations, agencies, and companies signed on as Rare Disease Day Partners to promote awareness of rare diseases as a public health issue for World Rare Disease Day on Feb. 28th. They did a fantastic job, and we extend our heartfelt gratitude to them!

Through their efforts, awareness was raised across the nation via special events, letters to the editor, videos, news stories, and state proclamations.

View list of Rare Disease Day Partners here.

(How to become a Partner).

PNH Support Meetings

April, 2009 — NORD is hosting a series of regional support meetings for patients and families affected by paroxysmal nocturnal hemoglobinuria (PNH). Details for Chicago,Il.

What is PNH? Power Point presentation download.
If you do not have Power Point on your computer, you can download a free viewer here.

View NORD's 25th Anniversary Gala video