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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.
Summit to Focus on Innovation and Access
Former FDA Commissioner David Kessler will moderate an all-day Partners in
Progress Summit on rare diseases and orphan products at the Willard Intercontinental
Hotel in Washington, DC, on Thursday, May 14. Thought leaders from government and
industry will focus on innovation in the development of new treatments and how to
ensure that patients are able to access needed treatments. Speakers will include
Social Security Commissioner Michael Astrue and former Health and Human Services
Secretary Tommy Thompson.
NORD To Honor Pioneering Achievements at Annual Gala
Individuals and companies will be honored for outstanding contributions toward improving
the lives of people affected by rare diseases at the 2009 NORD Gala on the evening of
Thursday, May 14, at the National Press Club in Washington, DC. The Gala is NORD's
primary annual fundraiser, helping support many programs and services for patients and their
families.
Instructions for Sponsors and Advertisers.
Past Honorees.
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.
NORD Issues RFPs for 2009
As a result of donations from individuals and patient groups, NORD has posted seven new Requests
for Proposals (RFPs) for clinical studies of five rare disorders: arteriovenous malformation,
cat eye syndrome, essential thrombocythemia, olivopontocerabellar atrophy and related disorders,
and pseudomyxoma peritonei.
To read NORD's RFPs and/or to download the applications, go to
http://www.rarediseases.org/research/requests
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).
Rare Disease Day Partner Spotlight
Lymphangiomatosis & Gorham's Disease Alliance Each time you return to your
screen, you'll see the logo for a different Rare Disease Day Partner. These logos are links.
We encourage you to visit the Partners' websites to learn more about them and the rare diseases of particular interest to them.
States Across the Nation Declare Rare Disease Day!
Individuals and organizations across the U.S. asked their governors to proclaim Feb. 28th
Rare Disease Day in their states. The states in green are the ones for which NORD has been notified that proclamations were issued.
View Proclamations.
Listen to FDA Podcast on Drug Approval Process
NORD and the U.S. Food and Drug Administration hosted
a podcast for NORD Member Organizations and Rare Disease Day Partners on Feb. 27th.
Senior staff from FDA talk about the process, with emphasis on orphan products, and then respond to questions from the audience.
Download podcast.
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.
View NORD's 25th Anniversary Gala video
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