Navigation Links
NORD and DIA to Host Conference on Rare Diseases and Orphan Products

WASHINGTON, Sept. 14, 2011 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) and the Drug Information Association (DIA) will host the U.S. Conference on Rare Diseases and Orphan Products in Washington, D.C. October 11-13.  Everyone with an interest in rare diseases or orphan products is invited.


"This conference will be truly unique in that it will draw together all the stakeholders from government, industry, academia and patient organizations," said Peter L. Saltonstall, president and CEO of NORD.  "Most of the nearly 7,000 rare diseases don't have FDA-approved treatments.  The purpose of this conference is to bring everyone together—government, industry, medical researchers, investors and patients—to examine the challenges and opportunities."

NORD is a nonprofit organization representing all Americans affected by rare diseases.  DIA is a nonprofit, global professional association of members involved in pharmaceutical and medical device discovery, development, and management.

Senior staff from the National Institutes of Health (NIH) and Food and Drug Administration (FDA) will speak at the conference, along with thought leaders from the pharmaceutical industry, medical researchers, and the investment community.  Speakers will include:

  • NIH Director Francis Collins, MD, PhD
  • Social Security Commissioner Michael Astrue
  • Christopher P. Austin, MD, PhD, Scientific Director, NIH Center for Translational Therapeutics
  • Janet Woodcock, MD, Director of FDA's Center for Drug Evaluation and Research
  • John K. Jenkins, MD, Director, Office of New Drugs, FDA Center for Drug Evaluation and Research
  • Suzanne L. Bruhn, PhD, Senior VP, Shire Human Genetic Therapies
  • Marc Dunoyer, Global Head, Rare Diseases, GlaxoSmithKline
  • Lynne Fahey McGrath, MPH, PhD, Vice President, North American Head Drug Regulatory Affairs, Novartis Oncology Corporation
  • Dennis Jackman, Senior VP, Public Affairs, CSL Behring
  • Margaret Anderson, Executive Director, FasterCures
  • Jonathan S. Leff, AB, MBA, Managing Director, Warburg Pincus
  • Jeff Allen, PhD, Executive Director, Friends of Cancer Research

While the conference is co-hosted by NORD and DIA, collaborators also include Duke University School of Medicine, the European Rare Diseases Organization (EURORDIS), FDA and NIH.  Topics will include:

  • How federal policies affect patients with rare diseases
  • NIH grant and FDA approval requirements
  • How health care reform will impact rare disease patients
  • Venture philanthropy
  • Clinical trial designs and case examples
  • The economics of investing in orphan products

Information about the conference is available on the NORD website ( and on a special site for online registration hosted by DIA: (

The conference will take place at the Omni Shoreham Hotel in Washington, D.C.   For additional information, contact NORD or DIA.

SOURCE National Organization for Rare Disorder (NORD)
Copyright©2010 PR Newswire.
All rights reserved

Related medicine technology :

1. Genaera Corporation Presents Interim Phase 1 Data for Obesity Compound Trodusquemine (MSI-1436) at IBC Conference
2. Intellect Neurosciences, Inc. to Present Data on Alzheimers Vaccine at 13th International Congress of Immunology Conference
3. Pre-clinical Data on Recent Advances with HIV VLP Vaccine Presented at AIDS Vaccine 07 Conference
4. Poniard Pharmaceuticals to Present Updated Results of Picoplatin Phase 2 Small Cell Lung Cancer Trial at 12th World Conference on Lung Cancer
5. ViroPharma to Present at Three Upcoming Healthcare Conferences
6. Advanced Life Sciences to Present Data on Selected Cethromycin Therapeutic Studies at the 47th Interscience Conference on Antimicrobial Agents and Chemotherapy
7. Threshold Pharmaceuticals Announces Two Presentations on Glufosfamide at the 2007 European Cancer Conference (ECCO)
8. GeoVax Successful HIV/AIDS Vaccine Trial Data Presented at AIDS Vaccine 2007 Conference
9. Arena Pharmaceuticals to Present at Four Upcoming Investor Conferences
10. Promising Data from Paratek Pharmaceuticals MAR Inhibitor Program Presented in Late Breaker Session at the 47th Interscience Conference on Antimicrobial Agents and Chemotherapy
11. Alfacell Corporation to Present at UBS Global Life Sciences Conference
Post Your Comments:
(Date:6/24/2016)... The Academy of Managed Care Pharmacy (AMCP) ... would allow biopharmaceutical companies to more easily share health ... and coverage decisions, a move that addresses the growing ... The recommendations address restrictions in the sharing of ... label, a prohibition that hinders decision makers from accessing ...
(Date:6/24/2016)... , June 24, 2016 According ... by Type (Standard Pen Needles, Safety Pen Needles), Needle ... GLP-1, Growth Hormone), Mode of Purchase (Retail, Non-Retail) - ... This report studies the market for the forecast period ... reach USD 2.81 Billion by 2021 from USD 1.65 ...
(Date:6/23/2016)... -- MedSource announced today that it has selected Datatrial,s ... choice.  This latest decision demonstrates MedSource,s commitment to ... by offering a state-of-the-art electronic data capture (EDC) ... the EDC platform of choice in exchange for ... long been a preferred EDC platform by our ...
Breaking Medicine Technology:
(Date:6/27/2016)... ... June 27, 2016 , ... "FCPX editors can now ... of Final Cut Pro X," said Christina Austin - CEO of Pixel Film Studios. ... Final Cut Pro X users can now reveal the media of their split ...
(Date:6/27/2016)... ... 27, 2016 , ... A revolution is underway. Brooklyn-based ... experience for the millions of people who require these medical transport services annually. ... through the use of technology. Now, SmartEMS has put forth an industry-changing app ...
(Date:6/26/2016)... , ... June 26, 2016 , ... On June 10-11, ... of the 2016 Cereal Festival and World’s Longest Breakfast Table in Battle Creek, MI, ... the city’s history as home to some of the world’s leading providers of cereal ...
(Date:6/26/2016)... ... June 26, 2016 , ... Brent Kasmer, a legally blind and certified personal trainer ... through a fitness app. The fitness app plans to fix the two major problems leading ... a one size fits all type program , They don’t eliminate all the ...
(Date:6/25/2016)... ... , ... Austin residents seeking Mohs surgery services, can now turn to Dr. ... Russell Peckham for medical and surgical dermatology. , Dr. Dorsey brings specialization to include ... in Mohs Micrographic Surgery completed by Dr. Dorsey was under the direction of Glenn ...
Breaking Medicine News(10 mins):