Navigation Links
DuchenneConnect Celebrates One Year Anniversary
Date:1/23/2009

the community into a registry with global partnerships provides crucial information to researchers and clinical investigators, and may further accelerate therapeutic discoveries. To see what was just the seed of an idea of a group of passionate leaders in the Duchenne community, blossom into a thriving online resource, is truly phenomenal. We may be many years from knowing the direct affect of the early intervention DuchenneConnect provides, but I believe it will prove an extremely positive and crucial tool."

Early in 2007, a group of thought leaders in the Duchenne muscular dystrophy community, led by PPMD, began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with the disease, along with their families, friends and caregivers, to connect them with medical research, clinical care, clinical trials and each other. At the same time, it would also be a resource for industries with an interest in Duchenne, allowing access to a database of information provided by patients and their families --information that could prove vital to advances in care and treatment. This resource, a breakthrough multidirectional information portal for Duchenne and Becker muscular dystrophy, would help connect these stakeholders, while providing them with resources never before available in one place. Today, DuchenneConnect is a robust and cutting-edge website and registry meeting the goals and expectations of its creators.

DuchenneConnect is a collaboration of Centers for Disease Control and Prevention (CDC); Innolyst, Inc.; Emory University, Department of Human Genetics; National Institutes of Health (NIH) Office of Rare Diseases: Collaboration, Education and Test Translation (CETT) Program; National Center for Biotechnology Information (NCBI); and PPMD and supported by advisory experts throughout the neu
'/>"/>

SOURCE Parent Project Muscular Dystrophy
Copyright©2009 PR Newswire.
All rights reserved

Page: 1 2 3 4

Related medicine news :

1. Gift of Life Celebrates 35th Anniversary as National Leader in Organ Donation
2. Grifols Celebrates Initial Construction of New IVIG Facility with Los Angeles Officials and Dignitaries
3. Coalition for Pulmonary Fibrosis Celebrates Landmark Year for Awareness, Advocacy, Research
4. Glaucoma Research Foundation Celebrates National Glaucoma Awareness Month
5. Cystic Fibrosis Services Pharmacy Celebrates 20th Anniversary
6. Mental Health America Celebrates 100 Years of Mental Health Advocacy and Support
7. Retired Heart Surgeon Dr. Dwight Lundell Celebrates 65th Birthday by Placing First in Arizona Ironman Competition
8. Cloned Canine Celebrates Her 1st Birthday
9. Blue Shield of California Celebrates Completion of New Lodi Campus
10. Tenegar Town Celebrates Dedication Of New Clinic As Beacon Of Hope
11. Florida's Natural Celebrates 75 Years with Record Performance
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:7/12/2014)... (PRWEB) July 12, 2014 Doylestown Hospital ... a variety of men’s health questions. Paddock tackles ... to men, why women live longer than men, and ... Men's Health Made Simple featured on Doylestown Hospital’s ... a hernia at any age. If you notice pain, ...
(Date:7/12/2014)... July 12, 2014 Utah Valley Entrepreneurial ... startups, with awards being bestowed to companies in revenue, ... outstanding entrepreneur community with recognition for new ideas as ... with incoming revenue. , 25 Under 5 highlights outstanding ... that are under 5 years old. Award recipients were ...
(Date:7/12/2014)... article released by Seattle's well known plastic surgeon, Dr. Bryan ... cosmetic surgical procedures in summer months . , As ... enliven the rainy Pacific Northwest, many people are turning their ... out as much during the winter as they had planned. ... eager to look their best for their summer vacations, and ...
(Date:7/12/2014)... (PRWEB) July 12, 2014 Wright & Schulte ... clients in Just For Men Lawsuits (case #59776/2014), announces ... consumers of reports that allege the popular hair dye, Just ... burns to their face, neck and other areas. In addition ... For Men chemical burns , the advertisements being run by ...
(Date:7/12/2014)... CA (PRWEB) July 12, 2014 ... power score of 4.1 out of 5. This ... that have been underpinning buyer negotiation power over ... procurement analyst Anna Son, “during the period, surging ... rising costs associated with new product development, have ...
Breaking Medicine News(10 mins):Health News:Ivyland Medical Center’s Dr. Brad Paddock Offers Tips for Men’s Health 2Health News:SquareHook is Recognized for UVEF 25 Businesses Under 5 Years-Watch Out 2Health News:Best Summer Cosmetic Surgeries Revealed in Article By Seattle Plastic Surgeon 2Health News:Just for Men Lawsuit News: TV Campaign Launched by Wright & Schulte LLC to Inform Consumers of the Alleged Association between the Popular Hair Dye and Chemical Burns 2Health News:Just for Men Lawsuit News: TV Campaign Launched by Wright & Schulte LLC to Inform Consumers of the Alleged Association between the Popular Hair Dye and Chemical Burns 3Health News:Just for Men Lawsuit News: TV Campaign Launched by Wright & Schulte LLC to Inform Consumers of the Alleged Association between the Popular Hair Dye and Chemical Burns 4Health News:Floor-Grade Instruments Procurement Category Market Research Report from IBISWorld has Been Updated 2Health News:Floor-Grade Instruments Procurement Category Market Research Report from IBISWorld has Been Updated 3Health News:Floor-Grade Instruments Procurement Category Market Research Report from IBISWorld has Been Updated 4
... , , , ... (AAOS)Creates Independent Organization , , ROSEMONT, ... incorporated the American Joint Replacement Registry (AJRR), a nonprofit organization dedicated to ... this proposed option is a patient safety best practice. , ...
... Achievement shows how ,plastic, these non-embryonic cells can be, ... The mouse may be named "Tiny," but what it ... that. , According to Chinese researchers, the birth of ... cell research: Healthy, fertile animals grown using so-called pluripotent ...
... The largest single competitive NSF award in SC history , ... Science Foundation (NSF) has awarded South Carolina $20 million to establish a statewide ... of human organs. , , Lead ... said, "We are trying to build tissue and organs from the inside out, ...
... , HARRISBURG, Pa., July 23 More ... care, valued at nearly $160,000, in the second quarter of ... , , "These clinics are ... services to those who cannot afford dental care," said Harlon ...
... , , SPOKANE, Wash., ... partnership with eHealth Initiative will hold the Northwest Medical ... national and regional speakers on September 10 and 11 ... rural healthcare professionals to learn about the latest in ...
... , DULUTH, Ga., July 23 /PRNewswire/ -- Get Screened ... to NHRA -- National Hot Rod Association -- fans at selected national ... at several recent NHRA race events, provides free blood pressure ... derma-scans to the race attendees. While Get Screened America focuses on ...
Cached Medicine News:Health News:American Joint Replacement Registry Announced 2Health News:Scientists Use Adult Stem Cells to Create Healthy Mice 2Health News:Scientists Use Adult Stem Cells to Create Healthy Mice 3Health News:National Science Foundation Announces $20M Research Award to South Carolina 2Health News:National Science Foundation Announces $20M Research Award to South Carolina 3Health News:More than 1,000 Underinsured and Uninsured Individuals Receive Free Dental Care 2Health News:INHS Brings Health Information Technology Conference to Spokane 2Health News:Get Screened America Goes After The 'Silent Killers' 2
(Date:7/10/2014)... NEWPORT NEWS, Virginia , 11. ... führender Hersteller von Kameras für die ... Brust (MBI/BSGI), hat heute die CE-Zulassung ... Mit dem CE-Zeichen kann Dilon das ... seinen Vertriebsbereich auf den Großteil der ...
(Date:7/10/2014)... 10, 2014 Yesterday, former Congressman ... device manufacturing facility. Rep. Kennedy and Dick ... facilitate cutting-edge research in neurological disease and treatment. ... health advocate, Garen Staglin , created One ... fundamental changes that will radically accelerate the development ...
(Date:7/10/2014)... , July 10, 2014   LabStyle ... Management Solution, today announced the appointment of Professor ... member of its Board of Directors. ... and business experience to LabStyle as an entrepreneur, ... legal and corporate governance expert. He currently serves ...
Breaking Medicine Technology:Dilon erhält CE-Zulassung für sein Navigator-Gamma-Sondensystem 2Representative Patrick Kennedy visits Moberg's medical device facility to discuss improvement in brain injury care 2LabStyle Innovations Welcomes Richard B. Stone to its Board of Directors 2LabStyle Innovations Welcomes Richard B. Stone to its Board of Directors 3LabStyle Innovations Welcomes Richard B. Stone to its Board of Directors 4
... , , SEATTLE, Dec. 9 Omeros Corporation today ... to serve on the Company,s Board. Mr. Spiegelman has also been ... are very pleased to welcome Dan to our Board and look ... CEO of Omeros. "Dan brings a substantial depth and breadth of ...
... , WALTHAM, Mass., Dec. 9 Decision ... focusing on pharmaceutical and healthcare issues, finds that compared to ... are being used more often to treat newly diagnosed patients ... second-line patients received a TNF-alpha inhibitor versus one year ago ...
Cached Medicine Technology:Daniel K. Spiegelman Elected to Board of Directors of Omeros 2TNF-Alpha Inhibitors Are Being Used More Often To Treat Newly Diagnosed Patients With Crohn's Disease 2TNF-Alpha Inhibitors Are Being Used More Often To Treat Newly Diagnosed Patients With Crohn's Disease 3
... national reference laboratory and a worldwide leader ... offers an extensive test menu of highly ... and anatomic pathology. Owned by the University ... than half of the nation's university teaching ...
... is a national reference laboratory and a ... development. ARUP offers an extensive test menu ... in clinical and anatomic pathology. Owned by ... include more than half of the nation's ...
... is a national reference laboratory and a ... development. ARUP offers an extensive test menu ... in clinical and anatomic pathology. Owned by ... include more than half of the nation's ...
... Laboratories is a national reference laboratory and ... and development. ARUP offers an extensive test ... tests in clinical and anatomic pathology. Owned ... clients include more than half of the ...
Medicine Products: