Partners

Strength Happens Together: PPMD’s Corporate & Organizational Partners

For over two decades, PPMD has funded projects we feel are the most impactful and will treat as many people in our community as quickly and effectively as possible. We pride ourselves on being intricately involved at all levels of the therapy development pipeline and recognize that the progress made is inextricably linked to our crucial advocacy work. We are dedicated to moving all potential therapies forward. We invest funds raised as quickly and efficiently as possible to maintain our comprehensive approach.

We know that no one organization or company will end Duchenne. That’s why we are grateful to all of our collaborators who, by joining forces with PPMD and the Duchenne community, make us all stronger. PPMD will accept corporate support so long as it is in accordance with our Corporate Relations Policy (download).

Duchenne Drug Development Roundtable

Established more than seven years ago, PPMD’s Duchenne Drug Development Roundtable (DDDR) is a group of committed innovators representing Industry and relevant stakeholders that has the goal of accelerating the development of meaningful treatments for Duchenne muscular dystrophy through open discussion to minimize duplication and to pool resources in pre-competitive space.

Strength in Inspiration: Corporate Sponsors

Our corporate sponsors are work closely with us to achieve our mission. These Sponsors invest in our key pillars: Research, Advocacy, Care, and Education through relevant projects, efforts, initiatives, programs, and more. We are proud to recognize the support of our sponsors and thank them for joining us as we work to end Duchenne.

Strength in Collaboration: Project Partners

As the catalyst to move research forward, PPMD is dedicated to promoting the patient voice in advocating for developing Duchenne therapies and insisting on patient involvement in studies and trials. We are proud to recognize our project partners who, like us, believe that patients need a voice in the fight to end Duchenne.

Certified Duchenne Care Center Program Support

Decode Duchenne 2018

Presenting

Supporting

End Duchenne Tour National Sponsors

 

Patient Preference Phase III

Annual Connect Conference

For information on PPMD’s annual conference and sponsors, please visit our Conference page.

Strength in Education: Engagement Partners

Knowledge is power in the fight to end Duchenne, and these education partners help PPMD bring important information and critical updates to the Duchenne community, as well as the broader rare disease community.

Strength in Network: Organizational Partners

PPMD maintains formal and informal partnerships with organizations around the nation and globe who share a similar mission, tactics, and ideology for the purposes of cooperation on research, sharing data, and raising awareness for the entire rare disease community.

Research

  • Institute of Medicine (IOM) Committee on Pediatric Studies
  • Health Research Alliance (HRA) Board of Directors
  • School of Mind, Brain and Behavior, University of Arizona Advisory Board
  • National Advisory Council on National Institute of Neurological Disorders and Stroke (NINDS)
  • TREAT-NMD’s Advisory Committee for Therapeutics, ad hoc member
  • TREAT-NMD’s Global Data Oversight Committee member
  • Clinical Trials Transformation Initiative Patient Executive Committee
  • Clinical Trials Transformation Initiative Patient Leadership Council
  • Expert Advisory Group for the FasterCures Intellectual Property Intersection Web site Member
  • National Society of Genetic Counselors Neurogenetics Special Interest Group member
  • Compassionate-Use Working Group, New York University School of Medicine
  • Friedreich’s Ataxia Research Alliance (FARA) Registry Steering Committee member

Advocacy

  • Department of Defense (DOD) Chair of Congressionally Directed Medical Research Program in Duchenne
  • Alliance for a Stronger FDA
  • Rare Disease Legislative Advocates (RDLA)
  • Muscular Dystrophy Coordinating committee (MDCC)
  • Global Genes Project
  • World Duchenne Organization (formerly UPPMD)
  • National Health Council Board of Directors
  • National Health Council Medical Innovation Action Team
  • Center for Patient-Driven Value Assessment Steering Committee
  • Research!America
  • FasterCures Patients Count Leadership Council
  • National Institutes for Arthritis Musculoskeletal Disease and Skin (NIAMS) Patient Advocacy Coalition
  • Friends of NCBDDD (CDC)
  • Friends of NICHD (Eunice Kennedy Shriver National Institute for Child Health and Human Development)
  • 2018 Extended Access Summit, Steering Committee

Care

  • American Council for Genetic Counseling Past President
  • Member of the Office of Rare Disease Research Global Rare Diseases (Patient) Registry and Data Repository (GRDR) selection committee in 2012
  • CDC Working Group on Quality of Life Models and Measures for People with Muscular Dystrophy and Other Significant Mobility Limitations
  • PPMD staff and consulting professionals now include three experienced healthcare providers: 2 board-certified genetic counselors and a board certified pediatric nurse practitioner
  • American Child Neurology Nurses Nominating Committee, chairman
  • CDC Care Considerations Steering Committee
  • CDC Care Considerations Implementation and Evaluation Committee

Education

  • Executive Committee member for the Johns Hopkins/National Institutes of Health Genetic Counseling Training Program
  • Co-Chair, Rare Disease Task Force, PCORnet
  • Expert Collaborator, American Academy of Pediatrics, Motor Delay Plain Language Project
  • PPMD staff regularly provides trainings for healthcare providers, educators, researchers, families, and other stakeholders.

PPMD Partner Income Breakdown

Support from our partners drives our programs and initiatives forward. In 2016*, support from our corporate partners totaled $2,034,000 – 24% of our total income for that year.


*latest available audited financial statement