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Partners

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.

Duchenne Drug Development Roundtable 2017

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.

PTC Therapeutics

Santhera

Sarepta

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.

Certitied Duchenne Care Center Program Support

Marathon Pharmaceuticals

Decode Duchenne 2017

Presenting

Sarepta

Supporting

PTC Therapeutics

Every Single [One] Tour National Sponsors

Catabasis

Pfizer Bamboo - sponsorship

PTC Therapeutics

Santhera

Sarepta

Summit

Patient Preference Phase II

Biomarin

Everylife Foundation

Pfizer

Patient Preference Phase III

Solid Bio

Bamboo-Pfizer

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.

BMS

Capricor Therapeutics

Catabasis

FibroGen

Italfarmaco

Natera

NS Pharma

Pfizer Bamboo - sponsorship

PTC Therapeutics

Reveragen

Santhera

Sarepta

Solid Bio

Summit

Wave Lie Sciences

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 Neurological Disorders and Stroke
  • TREAT-NMD’s Advisory Committee for Therapeutics, ad hoc member
  • Clinical Trials Transformation Initiative Patient Leadership Council
  • Expert Advisory Group for the FasterCures Intellectual Property Intersection Web site Member

Advocacy

  • Department of Defense (DOD) Chair of Congressionally Directed Medical Research Program in Duchenne
  • National Organization for Rare Disorders (NORD) Board of Directors
  • Alliance for a Stronger FDA
  • Rare Disease Legislative Advocates (RDLA)
  • Muscular Dystrophy Coordinating committee (MDCC)
  • Global Genes Project
  • UPPMD (Global PPMD)

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

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.


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