Jérôme Lejeune Foundation Participates in the U.N. Convention on the Rights of Persons with Disabilities
From June 9–11, 2026, the Jérôme Lejeune Foundation participated in the 19th Session of the Conference of States Parties (COSP) to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) at United Nations Headquarters in New York.
As the international community marked the twentieth anniversary of the Convention, the Foundation joined government leaders, disability advocates, and human rights organizations to celebrate the progress that has been made while calling attention to emerging ethical challenges posed by advances in science and technology.
Throughout the week, the Foundation participated in three key events:
- The Civil Society Forum on June 9
- A Foundation-hosted conference on June 10 titled "20 Years of the Convention on the Rights of Persons with Disabilities: Taking Stock of Progress and Strengthening Its Implementation"
- The General Debate of the Conference on June 11, where representatives addressed ministers and ambassadors from States Parties to the Convention.
The Convention has transformed the global understanding of disability over the past two decades, shifting the conversation from one centered primarily on assistance to one rooted in equal rights, participation, accessibility, and inclusion.
Representing the Jérôme Lejeune Foundation USA, Board Member Katie Friend Lelarge reaffirmed this principle, stating:
"Every person, whether living with a disability or not, possesses the same inherent dignity and fundamental human rights."
While recognizing significant progress, the Foundation also emphasized that important challenges remain. Access to healthcare, specialized support, and medical innovation continues to vary greatly depending on where a person lives. At the same time, advances in prenatal diagnosis and genetic technologies present new ethical questions that require continued vigilance to ensure scientific progress always serves the dignity of every human person.
Jean-Marie Le Méné, President of the Jérôme Lejeune Foundation, reflected on the significance of this milestone:
"Twenty years after the adoption of the Convention on the Rights of Persons with Disabilities, we must ensure that discrimination does not simply take new forms. Prenatal selection based on genetic or chromosomal characteristics risks creating a world in which some lives are considered less valuable than others. True inclusion begins with recognizing the equal value of every human being at every stage of life."
The Jérôme Lejeune Foundation remains committed to advancing the full implementation of the Convention and ensuring that medical and scientific progress continues to promote inclusion, protect human dignity, and improve the lives of individuals with genetic intellectual disabilities around the world.
About the Jérôme Lejeune Foundation
Founded in 1995, the Jérôme Lejeune Foundation carries out its mission through three pillars:
- Care: Providing specialized medical care for individuals with genetic intellectual disabilities. The Jérôme Lejeune Institute in Paris cares for more than 13,000 patients and is the world's largest medical center dedicated to genetic intellectual disabilities, including Down syndrome. Additional consultation centers have been established in Córdoba, Argentina, and Madrid, Spain.
- Research: Supporting and conducting therapeutic research aimed at improving the lives of individuals living with genetic intellectual disabilities.
- Advocacy: Defending the dignity and rights of people with genetic intellectual disabilities through engagement with international institutions, including the United Nations and the European Commission. Since 2020, the Foundation has held official ECOSOC consultative status with the United Nations.
Today, the Jérôme Lejeune Foundation serves through four national foundations located in France, the United States, Argentina, and Spain, with its international headquarters in Paris.
