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)
Read about diseases in NORD's Rare Disease Database.
Find an organization in our Organizational Database.
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
