Navigation Links
NIH announces expansion of Rare Diseases Clinical Research Network
Date:10/6/2009

tion is a critical element of rare diseases research and the partnerships represented in this program have tremendous potential to make great strides in understanding these diseases," said Stephen C. Groft, Pharm.D., director of NIH's Office of Rare Diseases Research (ORDR). "The network emphasizes collaboration not just among investigators from multiple research sites but between investigators and patient advocates as well."

The direct involvement of patient advocacy groups in network operations, activities, and strategy is a major feature of the RDCRN. Each consortium in the network includes relevant patient advocacy groups in the consortium membership and activities. These patient advocacy group representatives serve as research partners within their own consortia. Collectively, the Coalition of Patient Advocacy Groups (CPAG) represents the perspective and interests of all patient advocacy organizations associated with the RDCRN. The CPAG participants meet frequently throughout the year via teleconference and face-to-face meetings. They participate in network-level discussions and meetings. The CPAG chairperson is a voting member of the RDCRN Steering Committee.

Funds and scientific oversight for the RDCRN will be provided by ORDR and seven NIH Institutes, which will also contribute considerable administrative support to the network: the National Institute of Neurological Disorders and Stroke (NINDS), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Allergy and Infectious Diseases (NIAID), the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the National Institute of Dental and Craniofacial Research (NIDCR), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the National Heart, Lung and Blood Institute (NHLBI). Several consortia will also receive financial support from their associated patient advocacy groups.


'/>"/>
Contact: Kelli Marciel
Kelli.Marciel@nih.gov
301-496-4819
NIH/National Institutes of Health, Office of Disease Prevention
Source:Eurekalert

Page: 1 2 3 4 5 6 7 8

Related medicine news :

1. HHS Announces $75 Million in Supplemental Funding to States for Pandemic Flu Preparedness
2. CRC Health Group Announces Acquisition of Bayside Marin Recovery Center, San Rafael
3. UHW Announces: Antelope Valley Hospital Caregivers and Board Vote to Ratify First Union Contract With SEIU UHW-West
4. HEI, Inc. Announces Sale of RFID Division Assets
5. Caraco Pharmaceutical Laboratories, Ltd. Announces FDA Approval to Market Generic Version of Zyloprim(R)
6. Mettler-Toledo International Inc. Announces Webcast of Presentation at Thomas Weisel Partners 2007 Healthcare Conference
7. Z Trim Announces Revocation of Gregory Halpern Severence Agreement
8. Brooke Franchise Corporation Announces Selected July Results
9. Manor Care, Inc. Announces Record Date for Special Stockholder Meeting
10. Caraco Pharmaceutical Laboratories, Ltd. Announces FDA Approval to Market Generic Version of Adipex-P(R)
11. Planet Technologies Announces Agreement to Acquire Antigen Laboratories
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:8/29/2014)... UK (PRWEB) August 29, 2014 The ... ones in the in-vitro diagnostics industry; it is also ... growth is driven by the ongoing spread of AIDS ... primary factor associated with the upsurge of opportunistic infections ... and a broader availability of immunosuppressive medicines. Although for ...
(Date:8/29/2014)... 2014 Edvance360, a leading provider of ... online teaching, as well as 2011 winner and six-time-finalist ... Management System, announced that Brooke Education Services, Northwest Academy, ... Interactive Advertising Bureau of Canada (IAB Canada), StarSVCS, and ... are delighted to welcome each new client to the ...
(Date:8/29/2014)... Top10inaction, a professional product review website ... the online service industry for the month of August ... GotoMeeting and Infinite. , With over thousands of web ... which provider is ideally a good fit for their ... compelling consumer goods and services agencies to assist them ...
(Date:8/29/2014)... After having a double mastectomy due to cancer ... reconstruction. She found that the look of conventional enhancement ... needed to be a solution. , The MODIFIED IMPLANT ... who needs or wants breast improvements. It's more realistic ... of mind. Producible in design variations, the invention is ...
(Date:8/29/2014)... 2014 (HealthDay News) -- The West African Ebola outbreak took ... announcing an estimated 500 new cases this week -- the ... new cases arose in Liberia, the U.N. health agency said, ... the Associated Press reported. "There are serious ... to the WHO report. "The situation is worsening in Liberia ...
Breaking Medicine News(10 mins):Health News:Infectious Disease Testing Universe Examined in New VPG Research Report Available at MarketPublishers.com 2Health News:Infectious Disease Testing Universe Examined in New VPG Research Report Available at MarketPublishers.com 3Health News:Edvance360 Continues to Experience Growth in Corporate, K-12, Health, and Non-Profit Sectors 2Health News:Top10InAction Reveals Best Web Conference Providers 2Health News:Biggest Ever Weekly Rise in Ebola Cases, U.N. Agency Says 2Health News:Biggest Ever Weekly Rise in Ebola Cases, U.N. Agency Says 3
... to go on a mission to Mars? On June ... in Moscow for a simulated 520-day Mars mission conducted by ... for Biomedical Problems (IBMP) of the Russian Academy of Sciences. ... 90 experiments and realistic scenarios, including emergency situations, 20-minute communications ...
... ... uncanny resemblance to the patterns shown by people with damage to a particular part of ... , ... 2010 -- The way psychopathic prisoners play certain games bears an uncanny resemblance to the ...
... Swanson ... acids, Sustamine, Bioenergy Ribose, Powergrape and B-complex vitamins. , ... Fargo, ND (Vocus) June 3, 2010-- Swanson Health ... Swanson Health & Fitness Expo held at the 2010 Fargo Marathon. The performance ...
... ... services and expert author explains on his new site that advertising for new patients is ... New York, NY ... and expert author explains on his new site that advertising for new patients does not ...
... ... The combination with ProtectionPlus will further lower testing costs ... issues, has become a primary focus for many Cardiology practices and ... offer even further savings to the provider as UND seeks to ...
... The American Cancer Society and the National Palliative Care Research ... researchers at 12 institutions for studies aimed at reducing suffering ... will be conducted over the next two years. Since 2007, ... totaling almost $7 million. These grants, which are in addition ...
Cached Medicine News:Health News:520-day Mars mission simulation 2Health News:520-day Mars mission simulation 3Health News:520-day Mars mission simulation 4Health News:Playing Games in Prison May Reveal Roots of Psychopathy 2Health News:Playing Games in Prison May Reveal Roots of Psychopathy 3Health News:CONTEND – A New Sports Drink from Swanson FIT 2Health News:Medical Practice Marketing Strategies and Advertising Don't Mix 2Health News:Medical Practice Marketing Strategies and Advertising Don't Mix 3Health News:UND Acquires ProtectionPlus in Ongoing Effort to Reduce Nuclear Stress Testing Costs for Physicians 2Health News:UND Acquires ProtectionPlus in Ongoing Effort to Reduce Nuclear Stress Testing Costs for Physicians 3Health News:UND Acquires ProtectionPlus in Ongoing Effort to Reduce Nuclear Stress Testing Costs for Physicians 4Health News:$1.8 million awarded for palliative care research to improve care of seriously ill patients 2Health News:$1.8 million awarded for palliative care research to improve care of seriously ill patients 3Health News:$1.8 million awarded for palliative care research to improve care of seriously ill patients 4Health News:$1.8 million awarded for palliative care research to improve care of seriously ill patients 5
(Date:8/28/2014)... , Aug. 28, 2014 Pharmatech initiated ... investment into this game-changing method for matching cancer ... Today, clinical trials target specific cancers, disease staging, ... factors for the cancer, in the first place. ... this information may not be well known to ...
(Date:8/28/2014)... /PRNewswire-iReach/ -- EDGE Orthopaedics, a new entry in ... announce they have received their second FDA 510(k) ... Fracture Plating System. The VIEW Plating ... indications within the mid-foot. The system includes titanium ... (CC), Talonavicular (TN) and Evans plates along with ...
(Date:8/28/2014)... China , Aug. 28, 2014 ... TPI ), a pharmaceutical company that specializes in ... generics and active pharmaceutical ingredients (API) today updates ... Company,s Qionglai Facility (QLF). The ... Practice (GMP) dataset for China Food & Drug ...
Breaking Medicine Technology:Enrollment in Pharmatech's Revolutionary AccessPPM Program Launches 2EDGE Orthopaedics Receives Second FDA Clearance 2TPI Submits Dataset for GMP Inspection at Qionglai Facility (QLF) 2
... 2011 IVD Technology , a UBM Canon medical ... webcast on Challenges in Clinical Lab Automation and IVD ... take place on May 26, 2011 at 2:00 p.m. ET ... here . (Logo:   http://photos.prnewswire.com/prnh/20101214/LA16070LOGO ) ...
... BioPharma, Inc. (PBI) and Gilead Sciences, Inc. will be ... in Pulmonary Fibrosis" session at the 2011 American Thoracic ... 18, 2011.  The poster entitled Differing Effects of ... Following Bleomycin Instillation will be presented by John ...
Cached Medicine Technology:IVD Technology Announces Educational Lecture Webcast: Challenges in Clinical Lab Automation and IVD Instrumentation Development 2Plato BioPharma Presenting Poster at the American Thoracic Society Conference 2
... Quality EEG recording is assured even ... Neurofax has high performance, high sensitivity ... ECG rejection filter, shielded electrodes and a ... connection. Neurofax is a complete and ...
... MagPro is the high performance magnetic stimulator ... in medical research. , ,MagPro is able to ... precise studies of the field/nerve interface can be ... biphasic waveform and coil-current direction. , , , ...
... is a new top-line range of digital ... Atrial Fibrillation (AF). Because the T-series combines ... the treatment of AF is taken one ... the heart rhythm is monitored continuously and ...
... MAX Cooling Power, Deeper Lesions ... arrhythmias, including atrial flutter, Freezor MAX is ... catheter with an 8mm ablation tip was ... is connected to the same cryoconsole as ...
Medicine Products: