We urge WHO to promote a resolution on rare diseases

We urge WHO to promote a resolution on rare diseases

Publication date/time: Thursday, May 30, 2024

author: He wanted to

News type: News typeinternational

Domain: international

• He did so during the event held by the International Organization for Rare Diseases in Geneva on Wednesday in parallel with the 77th World Health Assembly through Juan Carrión, President of FEDER and its Foundation, and David Sánchez, Member of the Board of Directors and member of the International Working Committee of the ERDF.
• Under the slogan: Why invest in rare diseases? By ensuring universal health coverage for people with rare diseases, FEDER has been able to transfer its experience as a national organization, contribute to cooperation between countries and reflect on the value of the WHO decision.
• Because although there are already precedents such as the UN Resolution on Rare Diseases from 2021, it is necessary to “harmonize access to available resources, coordinate existing initiatives and put them at the service of other patients and territories”, transferred from FEDER. .
• Especially since “this will not only generate an impact in Europe, but also in other places in the world such as Latin America” where countries are still defining: They do not have a clear definition of what a rare disease is, there are no registries or plans, as Juan Carrón mentioned, He is also the President of ALIBER.

Press release | The Spanish Federation for Rare Diseases (FEDER) has urged the World Health Organization (WHO) to promote a resolution on these diseases next year that stops inequalities in access to resources for these diseases and contributes to achieving universal health coverage.

He did this during the event held by the International Organization for Rare Diseases (International Rare Disease Network) in Geneva on Wednesday in parallel with the 77th World Health Assembly in cooperation with France and Malaysia. Juan Carrión, President of FEDER and its Foundation, and David Sanchez, Member of the Board of Directors and International Working Committee of FEDER, traveled there.

Under the slogan: Why invest in rare diseases? By ensuring universal health coverage for people with rare diseases, FEDER has been able to transfer its experience as a national organization, contribute to cooperation between countries, strengthen the work between associations and governments and the value that having a global health resolution organization would mean.

This was reflected in this meeting in which more than 15 experts participated in the discussion, including Ministers of Health, WHO representatives and patient representatives from all over the world, including, in addition to the cooperating countries, Egypt and Brazil. o Zimbabwe to consider how rare diseases can be integrated into the Global Health 2035 goals, in line with the World Health Agenda.

“Patients generate knowledge where none exists and lead social transformation.”

From this perspective, Juan Carrón explained how we work through these patient associations at all levels because we know that in rare diseases, no country or organization can face the challenges they pose alone. how? Generating knowledge where it does not exist, for example, through the ENSERio LATAM study which for the first time gave us data on common challenges in Latin America.

Besides, the President of FEDER, who also participated as President of the Ibero-American Alliance for Rare Diseases (ALIBER), stated that patients also “lead the social transformation that strengthens global frameworks such as the UN Resolution on RD, initiatives to improve care and information exchange between countries such as the European Reference Networks.” Or national plans such as the SNS ER strategy that Spain has just evaluated and which we are working on to ensure continuity.

To achieve this, FEDER has worked for more than 25 years alongside alliances such as EURORDIS, the European Rare Disease Alliance, to integrate rare diseases into public policies. The developments that FEDER and Spain are working on are implanting more difficult realities, such as in the Ibero-American countries, where countries are still defined by: they do not have a clear definition of what a rare disease is, there are no registries, no plans, and no frameworks that organize resources in a homogeneous way.

The impact of the World Health Assembly resolution on rare diseases

The UN resolution paves the way for further integration of rare diseases into UN priorities. However, a framework for coordinated action with all stakeholders and Member States is needed to translate these commitments into action and overcome barriers to access to diagnosis, treatment and care for people with rare diseases to ensure that no one is left behind in the pursuit of a global goal. medical insurance.

The reality is that “despite the progress that has been identified, we need to harmonize access to available resources, coordinate existing initiatives and put them at the service of other patients and territories,” Feder said. A World Health Assembly resolution will be an essential tool to achieve this.

“Above all, because this will make an impact not only in Europe, but also in other places in the world such as Latin America, where there is still a significant lack of equity in access to available resources,” the FEDER president said.

Spain’s role before the United Nations and the World Health Organization

This event brings continuity to the actions that FEDER and the international union network have been developing for years to catalyze a global framework that ensures equitable access to resources for rare diseases. An action that allowed, as a major precedent, the inclusion of rare diseases in the 2019 Universal Health Coverage Declaration and, later, as a milestone, the 2021 UN Resolution.

A before-and-after resolution around which this event was centered, which seeks to provide continuity to ensure universal health coverage and which was updated last year 2023, to include, among other things, the group of people who have not been diagnosed for the first time thanks to the work of FEDER through RDI.

The involvement of our organization, and therefore our country, has always been fundamental in this sense. Spain, specifically, was one of the countries that already led the approval of the UN resolution on rare diseases in 2021 alongside Brazil and Qatar, which is why the leadership and broad representation of our country in this area seeks to strengthen universal health coverage for people with rare diseases through measures Specific such as a WHO resolution.

Published on 05/21/2024.

Updated on 05/30/2024.

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