Duchenne Awareness

Amplifying Global Voices for Duchenne

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.

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

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.

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.

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

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).

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.

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.

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September 7

Duchenne Awareness Day

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