We are an alliance of independent Duchenne organizations dedicated to advancing our missions to improve quality of life, care, and treatment of those affected by Duchenne. Our goals will be achieved by building trust, sharing knowledge, leveraging resources, and streamlining business practices. Each organization will be held to achieve their own mission as we collectively serve the entire Duchenne community.
Join the Alliance
Become a member, participate, empower your Foundation and the entire Duchenne community. The Duchenne Alliance and the Duchenne Dashboard intend to serve as a conduit and accelerant for the workflow that already exists between Foundations. Please read Marissa Penrod's essay, "Why Work Together?"
Articles of AssociationDemonstrate your commitment to the principles of the Duchenne Alliance. Although the Alliance is not a legal entity, it is important to unite and declare our purpose. Each Foundation that joins strengthens our effectiveness.
Participation AgreementShare resources confidentially while maintaining complete autonomy. One of our most valuable resources is scientific research. As members of the Alliance, we must understand and respect the confidentiality that is required to enable the scientific process
Your LogoPowerful images, transformative actions. Associate and Participating members are encouraged to submit their logos to the Alliance.
Duchenne Alliance Holds Groundbreaking Meeting on Duchenne Muscular Dystrophy, Ignites Revolution in Biomedical Funding
March 11, 2012 The Duchenne Alliance, a group of nearly 40 international independent foundations focused on Duchenne muscular dystrophy, has taken a groundbreaking step toward winning what it calls "the ultimate race against time."
Hotel Boulderado, Boulder, Colorado
The leaders of Duchenne non-profit organizations agreed at a meeting last week on the mass implementation of the DUCHENNE DASHBOARD, an innovative research grant management system that will facilitate an unprecedented level of collaboration among the many foundations, patient advocacy groups, and scientists dedicated to finding treatments or cures for Duchenne. Duchenne is the most common and lethal genetic disease diagnosed in childhood. There are currently no life extending treatment options for the over 300,000 males worldwide living with the condition, which usually limits life expectancy to the mid 20s. Read More
International Duchenne Alliance Annual Conference
March 9th- 10th, 2012 "Advancing our missions to improve the quality of life, care and treatment of those affected by Duchenne". - Pledge made by Duchenne Alliance members, March 2011
Hotel Boulderado, Boulder, Colorado
Greetings International Duchenne Foundations,
Please join us for the first anniversary meeting of the Duchenne Alliance as we harness our collective intelligence and accelerate. Read More
Ryan's Quest provides a travel grant to Johns Hopkins School of Medicine to help recruit patients for the REVERSE-DBMD clinical trial
November 13th, 2011The Ryan's Quest Foundation has awarded Kathryn Wagner, MD, PhD, of the Kennedy Krieger Institute, JohnsHopkins School of Medicine, Baltimore, Maryland a $76,500 grant that will ease the financial burden of families who are participating in the REVERSE-DBMD (Revatio for heart disease in Duchenne and Becker MuscularDystrophies) trial.
Funding for the grant was fully pledged within a week of submission to the Duchenne Dashboard.
Duchenne Alliance invites Global Participation at Action Duchenne Conference
November 5th, 2011The Duchenne Alliance took another major step forward presenting at the 9th Annual Duchenne Conference sponsored by Action Duchenne. The international conference for Duchenne muscular dystrophy featured organizations from around the world, representing more than a dozen countries.
"The Duchenne Dashboard was well received at the Action Duchenne Conference in London by leading Duchenne international scientists and clinicians..."
Duchenne Alliance: An Urgent Call to Action
July 10th 2011This meeting served as an open invitation and broad overview to encourage all Foundations to join the Alliance.
PPMD Duchenne Connect
Duchenne Alliance: Optimizing our Opportunity
July 7th 2011 A presentation of the Duchenne Dashboard by OpenOnward and members of the Duchenne Alliance lead to an open discussion that identified several action items.
The "Epic" Meeting at the Wentworth by the Sea.
March 18th-20th 2011This meeting laid the groundwork to unlock the tremendous human resources and passion that propels the Alliance.
New Castle, NH
Geolocalization of Alliance Resources
Find foundations, scientists, clinics and companies dedicated to conquering Duchenne muscular dystrophy. Put yourself on the map, get coordinated by loading your profile on the Duchenne Dashboard.
Duchenne Dashboard: A Federated Grant Management System
Join the rapidly growing network of foundations and scientists solving the slow steps in the funding process through enhaced software and collaboration. Foundations identify and co-fund the most promising proposals. Scientists reach the appropriate audience through single portal.