New York
UN
Deputy Secretary-General's remarks on the Occasion of World Duchenne Awareness Day [as delivered]
Statements | Amina J. Mohammed, Deputy Secretary-General
Statements | Amina J. Mohammed, Deputy Secretary-General
H.E. Mr. Tareq Albanai, Permanent Representative of Kuwait,
Excellencies,
Distinguished guests,
In a few moments, we will see stories that speak louder than any speech — stories of strength, love, and the daily reality of living with Duchenne.
We will see the lives behind the diagnosis, and the courage it takes to face Duchenne every single day.
I want to thank the Permanent Mission of Kuwait for convening us, and for championing this cause at the United Nations.
I also want to thank the people who shared their lives for the documentary, and those here today who live with Duchenne.
Your courage gives meaning to this gathering.
Today, we are called not only to recognize courage and resilience but also an urgent call for dignity, equity, inclusion, and action.
We know that every year, around 20,000 children are born with Duchenne. Most are boys.
For families, that diagnosis can feel like a clock starting to tick too fast bringing the fear of lost mobility, independence and lives cut short.
Yet, as the film we will see today makes clear, the challenges extend far beyond the medical. They touch every dimension of life: education, employment, participation in society, and above all the right to live with dignity.
Â鶹´«Ã½ General Assembly recognized this reality when designating World Duchenne Awareness Day as an official UN Day. It was a promise: that families living with Duchenne will not be invisible. In recent years Member States adopted a landmark resolution calling for rare diseases — including Duchenne — to be integrated into universal health coverage, national health planning, and social policy.
These resolutions are promises to those who are waiting for answers, for access, for dignity, and they are a mandate for governments, civil society, and the international community to act.
This year, the World Health Assembly took a historic step forward, adopting its first-ever resolution on rare diseases.
It urges countries to act: to strengthen health systems, to improve diagnosis and care, to accelerate research and innovation. It calls for a global action plan - developed with those most affected – to guide our collective efforts over the next decade.
The Fourth High-level Meeting on Noncommunicable Diseases and Mental health taking place in the weeks to come will consider a political declaration to guide action, raise awareness and promote greater advances in the diagnostics and treatment of rare diseases.
Resolutions alone are not enough.
Progress cannot only be measured in policy, but in lives changed.
Parents go bankrupt trying to buy care, children watch classmates as they sit on the sidelines. Adults with Duchenne are denied opportunities that others take for granted: the right to attend university, the chance to work, the dignity of independent movement.
These hardships strike at the heart of the very promise of the Sustainable Development Goals: that no one is left behind. The Goals are about each person on this planet, including those living with Duchenne.
Let’s draw strength from these voices and commit to care, to inclusive education, to decent work, and to dignity for all, and let’s work across borders and sectors to make this a reality.
Thank you to the filmmakers, the advocates, and — above all — the storytellers.
Your courage is our call to action.
Thank you.
Excellencies,
Distinguished guests,
In a few moments, we will see stories that speak louder than any speech — stories of strength, love, and the daily reality of living with Duchenne.
We will see the lives behind the diagnosis, and the courage it takes to face Duchenne every single day.
I want to thank the Permanent Mission of Kuwait for convening us, and for championing this cause at the United Nations.
I also want to thank the people who shared their lives for the documentary, and those here today who live with Duchenne.
Your courage gives meaning to this gathering.
Today, we are called not only to recognize courage and resilience but also an urgent call for dignity, equity, inclusion, and action.
We know that every year, around 20,000 children are born with Duchenne. Most are boys.
For families, that diagnosis can feel like a clock starting to tick too fast bringing the fear of lost mobility, independence and lives cut short.
Yet, as the film we will see today makes clear, the challenges extend far beyond the medical. They touch every dimension of life: education, employment, participation in society, and above all the right to live with dignity.
Â鶹´«Ã½ General Assembly recognized this reality when designating World Duchenne Awareness Day as an official UN Day. It was a promise: that families living with Duchenne will not be invisible. In recent years Member States adopted a landmark resolution calling for rare diseases — including Duchenne — to be integrated into universal health coverage, national health planning, and social policy.
These resolutions are promises to those who are waiting for answers, for access, for dignity, and they are a mandate for governments, civil society, and the international community to act.
This year, the World Health Assembly took a historic step forward, adopting its first-ever resolution on rare diseases.
It urges countries to act: to strengthen health systems, to improve diagnosis and care, to accelerate research and innovation. It calls for a global action plan - developed with those most affected – to guide our collective efforts over the next decade.
The Fourth High-level Meeting on Noncommunicable Diseases and Mental health taking place in the weeks to come will consider a political declaration to guide action, raise awareness and promote greater advances in the diagnostics and treatment of rare diseases.
Resolutions alone are not enough.
Progress cannot only be measured in policy, but in lives changed.
Parents go bankrupt trying to buy care, children watch classmates as they sit on the sidelines. Adults with Duchenne are denied opportunities that others take for granted: the right to attend university, the chance to work, the dignity of independent movement.
These hardships strike at the heart of the very promise of the Sustainable Development Goals: that no one is left behind. The Goals are about each person on this planet, including those living with Duchenne.
Let’s draw strength from these voices and commit to care, to inclusive education, to decent work, and to dignity for all, and let’s work across borders and sectors to make this a reality.
Thank you to the filmmakers, the advocates, and — above all — the storytellers.
Your courage is our call to action.
Thank you.