LEARN MORE social duchenne survey dmd and daily life Through the Social Duchenne project, an online survey
in the form of questionnaires was conducted to
determine the impact of the condition on the daily life
of those living with DMD and their families/carers.
LEARN MORE DMD Emergency Program ukrainian confict The World Duchenne Organization is collecting funds
to provide resources and support to patient
organizations that are coordinating refugees and
local families with Duchenne and Becker muscular
dystrophy
Data saves lives RESEARCH & DEVELOPMENT We connect data to generate new evidence for
more efficient and faster research in therapy
development and care.
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PATIENT NEEDS STANDARDS OF CARE &
QUALITY OF LIFE
We strive for all people living with dystrophinopathies
around the world to have access to the latest
standards of care and the best quality of life.
LEARN MORE
EMPOWERMENT EDUCATION & TRAINING Our goal is to empower the global dystrophinopathy
community voice to ensure research is patient and
family centred and led.
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PATIENT DATA DATA GOVERNANCE & ACCESS Patients should be in control of their own data.
DDF advocates for people living with
dystrophinopathies to be in control of their own data.
Patients should own, control and share their data.
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RESEARCH & DEVELOPMENT

DDF connects data to generate new evidence for more efficient and faster research in therapy development and care.

STANDARDS OF CARE & QUALITY OF LIFE

DDF strives for all people living with dystrophinopathies around the world to have access to the latest standards of care and the best quality of life.

EDUCATION & TRAINING

DDF provides training to all stakeholders. Our goal is to empower the global dystrophinopathy community voice to ensure research is patient and family centred and led.

DATA GOVERNANCE & ACCESS

Patients should be in control of their own data. DDF advocates for people living with dystrophinopathies to be in control of their own data.

BRINGING DATA TO LIFE TO IMPROVE THE WORLD OF DYSTROPHINOPATHIES

DDF brings together all sources of data related to dystrophinopathies, to make an impact for the global community. We do this by building innovative approaches to connecting data, and to promote knowledge sharing that will inform our strategy into the future.

Our strategic direction is built around four key pillars:

 

  • Research & Development
  • Standards of Care & Quality of Life
  • Training & Capacity Building
  • Data Equity & Access

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