NEW YORK: Kuwait’s Permanent Representative to the United Nations, Ambassador Tariq Al-Bannai, announced that Kuwait is preparing a draft international agreement aimed at enshrining the principles of dignity, protection and equal access to diagnosis, care and treatment for people with rare diseases in international law. Speaking at the UN headquarters during the second anniversary of World Duchenne Muscular Dystrophy Awareness Day, Al-Bannai said the agreement seeks to enhance research cooperation, data exchange and health system capacities across the regions. He underlined that the experiences of patients and their families must form the foundation of policy design and implementation.
Describing the effort as “comprehensive and long-term,” Al-Bannai called for regional consensus, active engagement of health organizations and broad political support to ensure adoption and implementation. He urged all delegations to join Kuwait in this initiative through constructive dialogue, while commending member states for integrating rare diseases into their broader human rights and development agendas.
Al-Bannai praised the leadership of UN Deputy Secretary-General Amina Mohammed in promoting inclusion of marginalized groups, stressing that inclusion is “not a luxury but a necessity” under international human rights law. He also thanked WHO Director-General Dr Tedros Adhanom Ghebreyesus and UN General Assembly President Philemon Yang for their support through video messages emphasizing health equity and development priorities.
The Kuwaiti envoy further expressed appreciation to Qatar’s Permanent Representative, Ambassador Sheikha Alya Al-Thani, for her cooperation and support. He highlighted that Qatar, alongside Brazil and Spain, had spearheaded the first UN resolution on rare diseases – paving the way for the adoption of General Assembly Resolution 78/12, which designates September 7 as World Duchenne Awareness Day. Kuwait submitted the resolution, which was unanimously adopted with the backing of 128 member states – the highest number of sponsors for any draft resolution during the UNGA’s 78th session. Al-Bannai said this milestone reflects the global community’s growing determination to ensure no one is left behind. — KUNA
