Duchenne Awareness

Amplifying Global Voices4Duchenne

About

A Global Voice for Every Duchenne Journey

Voices4Duchenne is a global, community-driven initiative dedicated to advancing the rights, visibility, and well-being of people living with Duchenne muscular dystrophy and their families. Through advocacy, storytelling, and international cooperation, we work to elevate Duchenne on the world stage. Over the past decade, these challenges have gained unprecedented visibility at the United Nations and other global forums. 

From Strength to Hope

A Call for Global Action on World Duchenne Awareness Day 2025

From Strength to Hope:

A Call for Global Action on World Duchenne Awareness Day 2025 brings together the voices of patients, families, and advocates in a powerful reflection of resilience and shared purpose. Marking World Duchenne Awareness Day 2025 under the theme “Family: the heart of care,” the film recognizes families as the foundation of strength, advocacy, and hope within the Duchenne community. 

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Faces Behind Change

Our Dedicated Team

Our team brings together advocates, parents, professionals, and global partners united by one purpose: to elevate the voices of those living with Duchenne. With diverse expertise and a shared commitment to impact, we work collaboratively to drive awareness, influence policy, and support families worldwide. Every member of our team plays a vital role in shaping a stronger, more inclusive future for the Duchenne community.

Core Team

Voices4Duchenne team: Founder - Rasha Alnaibari
Founder

Rasha Alnaibari

Rasha leads Voices4Duchenne with a deep commitment to elevating global awareness, strengthening advocacy, and ensuring families affected by Duchenne are heard and supported. Her vision drives the initiative’s mission, partnerships, and long-term strategy.

Voices4Duchenne team: Community & Project Support - Aya Taqi
Community & Project Support

Aya Taqi

Aya supports core programmes and community engagement efforts, helping coordinate projects and ensuring families remain at the heart of every initiative.

Voices4Duchenne team: Community & Project Support - Shahd El-sonni
Community & Project Support

Shahd El-sonni

Shahd contributes to project delivery, outreach, and community connections, supporting the smooth implementation of Voices4Duchenne’s activities and campaigns.

Collaborators

Voices4Duchenne team: Creative & Graphic Design Lead - Khaled Hafi
Film Editor

Khaled Hafi

Khaled is a video editor and short-film director with extensive experience in international cinema. He has contributed to major film festivals including JCC (2014–2016) and Manarat (2018–2019). His first short film, Freedom, was selected for multiple international festivals, including Cinemed (2011) and the Arab As.rra Festival in Rotterdam (2012).

Voices4Duchenne team: Creative & Graphic Design Lead - Lamis Alsayed
Creative & Graphic Design Lead

Lamis Alsayed

Lamis is a multidisciplinary designer and storyteller specializing in illustration, graphic design, and bookmaking. Drawing inspiration from culture, folklore, and untold narratives, she creates emotionally resonant visual experiences. Her work often intersects with advocacy, using design as a tool to raise awareness and spark meaningful engagement.

Voices4Duchenne team: Film Producer - Dora Bouchoucha
Film Producer

Dora Bouchoucha

Dora is an award-winning film producer and a leading figure in global cinema since 1994. She founded major cinema initiatives such as the Carthage Film Festival Projects Workshop and the SUD Écriture scriptwriting workshops. She has held prominent roles including Head of Fonds Sud, President of CNC’s “Aide Aux Cinémas du Monde,” and director of several international festivals. In 2021, she was appointed Vice President of the Institut du Monde Arabe in Paris, recognizing her outstanding contributions to southern and Mediterranean cinema.

Goals & Disibility Rights

Our Vision

Establish a comprehensive international framework or convention that protects the rights, needs, and dignity of people with Duchenne and rare diseases as a whole, grounded in principles of accessibility, inclusion, non-discrimination, and participation.

Voices for Duchenne SDG Goal 1 - No PovertyVoices for Duchenne SDG Goal 3 - Good health and well-beingVoices for Duchenne SDG Goal 10 - Reduced inequalitiesVoices for Duchenne SDG Goal 11 - Sustainable cities and communities
The Reality

Duchenne Cannot Wait

Duchenne muscular dystrophy is a life-limiting genetic condition affecting thousands of children worldwide. It leads to progressive muscle degeneration, loss of mobility, and severe medical complications.

Yet for many families, access to diagnosis, treatment, and support remains unequal.

Duchenne is not only a medical challenge.
It is a...

policy challenge
equity challenge
global health systems challenge

Approximately

0

boys and men are living with DMD Globally.

About

0

new cases are diagnosed each year worldwide.

Approximetely

0%

of boys require a wheelchair full-time.

September 7

Duchenne Awareness Day

The UN has declared a global day to elevate Duchenne awareness and unite the world in support.