NEW YORK, Sept 6: Kuwait is working to draft an international agreement aimed at safeguarding the rights of people with rare diseases by codifying the principles of dignity, protection, and equitable access to diagnosis, care, and treatment, Kuwait's Permanent Representative to the United Nations Ambassador Tariq Al-Bannai said on Friday.

Al-Bannai announced during a speech at the United Nations headquarters, marking the second anniversary of World Duchenne Muscular Dystrophy Awareness Day. The event included the screening of a documentary titled “From Strength to Hope: A Call to Activate the World.”

The proposed convention, he said, will focus on strengthening research collaboration, data sharing, and health system capacity across regions. It also aims to prioritize the lived experiences of affected families in shaping health policies and implementation frameworks.

“This is a comprehensive and long-term process,” Al-Bannai stated, emphasizing the need to build regional consensus, engage health organizations as strategic partners, and secure broad political backing for the agreement’s adoption and execution.

He urged all UN delegations to join Kuwait in the initiative through constructive engagement and sustained dialogue, noting that the effort is rooted in a shared commitment to leave no one behind.

Al-Bannai also highlighted the significance of integrating rare diseases into human rights and development agendas, particularly Duchenne Muscular Dystrophy, and commended the collective efforts of international stakeholders in bringing the issue to global attention.

The ambassador praised UN Deputy Secretary-General Amina Mohammed for her leadership in advancing the inclusion of marginalized communities within the UN system. “Inclusion is not a luxury but a necessity under international human rights law,” he said.

He also acknowledged the support of WHO Director-General Dr. Tedros Adhanom Ghebreyesus and UN General Assembly President Philemon Yang, both of whom sent video messages expressing their commitment to including patients with rare diseases in universal health coverage and global health policy frameworks.

Al-Bannai extended special appreciation to Qatar’s Permanent Representative to the UN, Ambassador Sheikha Alya Al-Thani, for her continuous support. He credited Qatar, Brazil, and Spain for co-sponsoring the first UN resolution on rare diseases, describing it as an “integral step” that led to the adoption of UN General Assembly Resolution 78/12, which officially designates September 7 as World Duchenne Awareness Day.

Kuwait submitted the resolution, which was adopted unanimously with the backing of 128 UN member states—the highest number of co-sponsors for any draft resolution during the 78th session of the General Assembly, Al-Bannai noted.