Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,200 diseases.
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.
• NORD Member Organization Events and Requests for Proposals
Helpful advice for establishing and growing a patient organization
• Read About NORD’s
Patient Assistance Programs
NORD administers various programs to help people obtain certain medications.
These include medication assistance programs for uninsured patients, Medicare and insurance co-pay programs,
early or expanded access to investigational products, travel and relocation assistance for clinical trial
participants, and emergency or limited access to products in short supply. Click here to read about the
patient assistance programs currently being administered by NORD.
• NORD Gets 4-Star Rating for Sound Fiscal Management
For the sixth consecutive year, NORD has been awarded the top (4-Star) rating for sound fiscal management by Charity Navigator, a leading evaluator of charities.
Less than four cents of every dollar donated to NORD goes to administrative and fundraising costs.
Details.
The NORD Partners in Progress Gala will take place on Tuesday, May 18, at a Washington, DC,
landmark---the Andrew W. Mellon Auditorium. At this event, NORD will honor pioneering medical researchers, a patient
organization, and companies that have developed innovative new treatments for patients with rare diseases. For information
about sponsorship and/or advertising opportunities, or to reserve one or more seats at the Gala, click
here.
Charity Navigator Awards 4-Star Rating to NORD
NORD has been given a top (4-star) rating by a leading independent evaluator of nonprofit
organizations, Charity Navigator. The 4-star rating honors charities that "consistently exceed standards and outperform
most others" in effective use of donated funds. Details.
Watch for this Message on Times Square
Through an unusual set of circumstances, NORD recently had an opportunity to post this PSA on the CBS Superscreen on Times Square in New York City. The message is simple and direct: 1 in 10 Americans have rare diseases.
View On-Demand Videos or Download Podcasts of NIH Events
NIH has established a web page where the public has free access to on-demand videos and downloadable podcasts of current
and past NIH seminars, conferences, and meetings. A schedule of upcoming NIH events is also
available on this site. View current offerings.
Also, view a schedule of upcoming NIH events.
European Conference on Rare Diseases (ECRD)
The ECRD will be held in Krakow, Poland May 13-15, 2010. The program will include discussions about
how to improve access to orphan drugs; policies for Centers of Expertise for Rare Disorders; determinants of research for rare
diseases; and services for
patients, families and caregivers. More information and registration.
Social Security Announces 38 Additional Compassionate Allowance Conditions
The Social Security Administration (SSA) is adding 38 more conditions to its list of Compassionate
Allowances. These are severely disabling conditions that qualify for expedited review for disability assistance. View
the SSA press release and list.
The conditions were identified following public hearings and with input provided by medical experts from the National
Institutes of Health, NORD's Medical Advisory Committee, and others.
NORD RN Publishes Article in NASN Journal
An article about NORD written by our RN, Stefanie Putkowski, has been published in the January, 2010 issue of the journal of
the National Association of School Nurses (NASN). This professional association has long depended on NORD for information
about the role of the school nurse in the medical management of children in the school system who are affected by rare
disorders.
The article is entitled, NORD--Providing Advocacy for People with Rare Disorders.Read the article.
PNH Meeting to Take Place April 10 in Portland
NORD is hosting a series of regional support meetings for patients and families affected by paroxysmal
nocturnal hemoglobinuria (PNH). Details for Saturday, April 10, 2010 meeting
in Portland.
For more information please contact solivo@rarediseases.org.
Future meetings to be held in Cincinnati on April 24th and Boston on May 8th. Please check back to see future meeting
dates and locations.
While the future of health care reform isn't certain at this point, the issue of lifetime and annual
insurance caps remains very important to patients and families affected by rare diseases. NORD has worked with its Member
Organizations to focus attention on this issue.
Read a recent New York Times article.
ABC News Covers Rare Disease Day
Families share their stories to help others understand why Rare
Disease Day is important. Read about it.
Rare Disease Day
February 28, 2010
Nearly 30 million Americans are affected by one of 7,000 rare diseases.
Cindy Abbott recently climbed Mt. Baldy in southern California as part of her training for her planned
attempt to climb Mt. Everest later this spring. Cindy is raising money for the Vasculitis Foundation, a NORD Member
Organization.
Read Cindy's story.
Flip-Cam Winners are Announced
Patient organizations signed
on as Rare Disease Day Partners were invited to submit brief descriptions
of how they might use a camcorder for a contest made possible by a donation
of the small video recorders by Shire Pharmaceuticals.
The entries all sounded so
deserving that NORD was unable to select winners so we held a drawing
at a Rare Disease Day event at the University of Connecticut.
A UCONN student (sophomore Liah Nelson) drew names from a bowl.
The Flip-cam winners are:
Alstrom Syndrome International
ECD Global Alliance
MAGIC Foundation
Periodic Paralysis Association
Thanks to all who entered this
contest. We wish we could give Flip-cams to all!
Read Blog by NORD President On Larry King Live
Read an invited blog by NORD's president about Rare Disease Day on the Larry King Live
Facebook page.
We Salute Our Rare Disease Day Partners!
More than 300 patient advocacy groups, government entities, academic institutions, and companies
producing orphan products have signed on as Rare Disease Day Partners for 2010. Becoming a Partner means they
support the purpose of the day and will display the logo or promote awareness of the day in other
non-commercial ways. View our list of
Partners for 2010. Learn how to
become a Partner.
Over 1200 Disease Reports
Not a Subscriber yet?
Details Here
Help NORD improve the lives of people with rare diseases.
Make an online donation in honor or memory of a friend or loved one.
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Coming soon: patientINFORM
This page, which will launch soon, will provide access to selected articles about rare diseases published in medical journals.
Who We Are
NORD is a unique federation of individuals and organizations working together
to build a better world for people affected by rare diseases.
Read about NORD.
NORD has partnered with Inspire to create a free, unique online community
service for rare-disease patients, their families, and caregivers. It will be a
place where people can find and support one another, share stories, and build a
network of online friends.
Newsroom
Quick facts, FAQs, and other information
for members of the press. Click for
details.
Looking for Help?
Click on one of these links to send email to NORD's Nurse
or Genetic Counselor
with questions or concerns. Or you can call (800)999-NORD.
Free Booklets for Physicians
NORD provides free booklets on rare diseases to physicians and other medical specialists.
(Go to story)
Medical Assistance Programs
NORD’s Medication Assistance Programs provide specific prescription drugs to people who cannot
afford them. (Go to Article)
NORD is a participant in the Combined Federal Campaign: #11992 in the CFC brochure.
