OEA - CP - Resolución CP INF 10856 add 1

OAS/Ser.G CP/INF. 10856/26 add. 1 26 February 2026

Original: Spanish

CONCEPT PAPER AND DRAFT AGENDA

COMMEMORATION OF RARE DISEASE DAY March 4, 2026

(Submitted by the Permanent Mission of Peru)

PERMANENT COUNCILPERMANENT MISSION OF PERU

TO THE

ORGANIZATION OF AMERICAN STATES

Note No. 7-5-M/047 The Permanent Mission of Peru to the Organization of American States presents its compliments to the Chair of the Permanent Council and has the pleasure to refer to note No. 7-5-M/41, requesting the inclusion of the item “Commemoration of Rare Disease Day” on the order of business of the regular meeting of the Permanent Council scheduled for Wednesday, March 4, 2026 In that regard, the Permanent Mission of Peru is pleased to submit to the Chair of the Permanent Council the accompanying concept paper and draft agenda for the aforementioned item. The Permanent Mission of Peru to the Organization of American States avails itself of this opportunity to convey to the Chair of the Permanent Council the renewed assurances of its highest consideration. Washington D.C., February 26, 2026 Chair of the Permanent Council Organization of American States Washington, D.C.3

CONCEPT PAPER

REGULAR MEETING OF THE PERMANENT COUNCIL

COMMEMORATION OF RARE DISEASE DAY

Date: Wednesday, March 4, 2026

Place: Simón Bolívar Room Background Rare Disease Day is commemorated annually on the last day of February to raise visibility of people living with rare diseases and highlight the particular challenges they and their families face, while promoting greater public awareness and a supportive, inclusive approach.

At the inter-American level, the Organization of American States began addressing this issue in 2021 at the initiative of Peru, recognizing that rare diseases pose not only medical challenges, but also significant implications for the exercise of fundamental rights.

In March 2022, the Permanent Council welcomed a declaration on World Rare Disease Day.

At the inter-American level, the Organization of American States began addressing this issue in 2021 at the initiative of Peru, recognizing that rare diseases pose not only medical challenges, but also significant implications for the exercise of fundamental rights.

In March 2022, the Permanent Council welcomed a declaration on World Rare Disease Day. Later that year, the General Assembly included the topic for the first time in the resolution “Promotion and Protection of Human Rights,” adopting a mandate entitled “Human rights and people living with a rare disease and their families.”1 / In keeping with that mandate, the Department of Social Inclusion of the OAS Secretariat for Access to Rights and Equity released an awareness-raising video featuring testimony from people living with rare diseases in the region, conveying a message grounded in a human rights approach. In 2023, the General Assembly adopted a mandate instructing the Permanent Council to include annually in its agenda the commemoration with a human rights approach and a gender perspective of Rare Disease Day at its regular meeting closest to February 28 each year.2 / For its part, in December 2021, the United Nations General Assembly adopted resolution 76/132 “Addressing the challenges of persons living with a rare disease and their families,” which calls upon member states to strengthen comprehensive public policies in favor of people living with rare diseases and their families, based on the principal international human rights instruments. That resolution consolidated recognition of the issue as a crosscutting matter involving equal opportunities, inclusion, and development. More recently, on May 27, 2025, the World Health Assembly adopted, resolution WHA78.11 “Rare diseases: a global health priority for equity and inclusion.”3 / Through that decision, the member states agreed to support the development of a comprehensive global action plan on rare diseases, scheduled for adoption at the Eighty-first World Health Assembly in 2028. The World Health

1 . Resolution AG/RES. 2991 (LII-O/22), “Promotion and Protection of Human Rights,” section xxiv. “Human rights and people living with a rare disease and their families.”

scheduled for adoption at the Eighty-first World Health Assembly in 2028. The World Health

1 . Resolution AG/RES. 2991 (LII-O/22), “Promotion and Protection of Human Rights,” section xxiv. “Human rights and people living with a rare disease and their families.” 2 . Resolution AG/RES. 3003 (LIII-O/23), “Promotion and Protection of Human Rights,” section xiii. “Human rights and people living with a rare disease and their families.” 3 . Resolution available at https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_R11-en.pdf4 Organization was also mandated to undertake preparatory work, including compiling an inventory of existing standards and guidelines, preparing an initial technical report, and identifying opportunities for technological innovation to improve diagnosis, treatment, and the management of clinical information. This renewed momentum at the global level provides an opportunity for the Americas to review progress achieved to date, identify shared challenges, and strengthen hemispheric cooperation from a human rights, inclusion, and equity perspective. Objective To provide an opportunity for reflection on the situation of people living with rare diseases and their families from a human rights perspective, highlighting regulatory and public policy advances at the international and regional levels, as well as persistent challenges related to inclusion, equal opportunities, and effective access to rights. The commemoration will underscore the importance of the inter-American approach to this issue, given its crosscutting nature and its impact on the full exercise of fundamental rights. Draft agenda

1. Presentation by the Permanent Representative of Peru, Ambassador Rodolfo Coronado

2. Statement by Dr. Anselm Hennis, Director, Department of Noncommunicable

Diseases and Mental Health, Pan American Health Organization

3. Remarks by a panelist (Costa Rica) (to be confirmed)

4. Remarks by member states.