NORD Awards 20 Research Grants

NORD has awarded 20 new grants for research on rare diseases. This brings the total amount awarded by NORD in grants and fellowships in 2004 to a record high: $804,538. Read brief descriptions provided by the researchers of the 20 new studies.

Holidays A Good Time to Create Family Medical History

As families gather for the holidays, it’s a good time to compile a family health history. Recently, the US Surgeon General held a press conference to describe a "Family History Initiative" to encourage Americans to do this. Read more.

NIH Regional Meeting To Take Place in Philadelphia

The Office of Rare Diseases of the National Institutes of Health (NIH) is sponsoring a training workshop on "Gaining Access to Research Resources" for leaders of national patient support groups. The workshop will be held at the Radisson Plaza Warwick Hotel in Philadelphia on January 28-30, 2005. This meeting is being coordinated by NORD. If you are a director of a patient group and are interested in attending, please contact Susan Olivo at NORD (solivo@rarediseases.org or 203-744-0100). (Details)

NORD�s Washington Office Needs Your Input

To help guide NORD�s efforts related to public policy, please take a few minutes to respond to a survey on our Washington Office page. Your response will go directly to NORD�s Vice President for Public Policy and will be used only for the purpose of helping NORD represent the rare-disease community. See survey.

Students Choose NORD For Fundraising Campaign

University students preparing for careers in fields such as speech therapy and audiology have chosen to support NORD in their fundraising campaign this year. The National Student Speech Language and Hearing Association (NSSLHA), which has 12,000 members and chapters on 300 college and university campuses, will donate funds from walk-a-thons and other activities to help people with rare diseases. Read more.

View Photos, Read Highlights of 2004 NORD Conference

Patients and their families, medical professionals, and academic researchers shared information at the 2004 NORD Annual Conference, held in October in the Minneapolis area. Photos and highlights.

NORD's 2003 Annual Report Now Available

In 2003, NORD gave away more than $38.2 million in drug assistance through its medication assistance programs. It awarded 21 research grants and fellowships with a total value of $768,134. To read about other highlights of the year, and to view NORD's sources of funding and how funds are disbursed, go to the 2003 NORD Annual Report. (To request that a copy be sent by mail, call 203 744-0100 or write to orphan@rarediseases.org.)

Subcommittee Recommends Research Funding Increase

A U.S. House of Representatives subcommittee has recommended an increase in funding for the Orphan Products Research Grants Program of the U.S. Food and Drug Administration. This is a good first step to expand federal funding for rare-disease research, but additional work is needed. Read a message from NORD's Washington Office to find out how you can help.

NORD Supports Legislation to Phase Out Medicare Waiting Period

NORD supports legislation recently introduced by U.S. Senator Jeff Bingaman (D-NM) to phase out the two-year waiting period between the time a person qualifies for Social Security Disability Insurance (SSDI) and is able to obtain Medicare health insurance coverage. Seriously ill people under age 65 who become disabled often find themselves without health insurance at the time in their lives when they need it most. More than a million Americans are believed to be affected. Go to story.

View Photos From NORD�s Tribute Banquet

At the 2004 NORD Tribute Banquet, held in May in Washington, DC, four individuals and two companies were honored for their activities on behalf of people with rare diseases. Read about the 2004 honorees. View photos from the NORD Tribute Banquet.

Request Your Copy of Generic Biologics White Paper

In March of 2003, NORD hosted a symposium in Washington, DC, on an emerging issue of great importance to the rare disease community - Exploring the Pathway to Generic Biologics: Are Therapeutically Equivalent Biologics Feasible and Desirable? Speakers, representing government agencies, academic institutions, and industry, addressed scientific, economic, and regulatory concerns related to this complex topic. A publication summarizing the proceedings is available. Call (203) 744-0100 or write to orphan@rarediseases.org to request copies. (View a PDF copy of the White Paper)

Experiences of the Rare Disorder Community

In 1989, a Congressional committee released a report on the ways in which having a rare disease affects patients and their families. Now, NORD and a Sarah Lawrence College graduate student have conducted a similar, but smaller, study to update the findings. Read the full text of the report.

Now Available...
Guide to Rare Disorders for Physicians

A new book for physicians and other medical professionals, The NORD Guide to Rare Disorders, is now available through the publisher, Lippincott, Williams & Wilkins. It covers 800 rare diseases with entries written by more than 600 experts. A review in The Lancet said it "reads like an international Who's Who in rare diseases." (To order copies.)

Read review from the May 10, 2003, issue of The Lancet.

NIH Establishes Rare Diseases Research Network

Legislation supported by NORD and the rare-disease community has resulted in the establishment by the National Institutes of Health (NIH) of a Rare Diseases Clinical Research Network. Over five years, $51 million in grant funding will be provided to advance research on diagnostics and treatments for rare diseases. (Read the NIH press release.)

New Service for Subscribers

More than 100 of the nation's top teaching hospitals, public libraries, schools, and universities subscribe to NORD's Rare Disease Database for patients and families. A subscription gives unlimited access to 1,130 disease reports and links to more than 2,000 patient organizations. This helpful tool for family counseling and referrals is now available via IP access. (Click for details)