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WHO ARE WE?

ERCAL is a multi-stakeholder Foundation, consisting of expert individuals and organizations that promote and work to improve the lives of people with rare diseases and their families in the Caribbean and Latin America.

MISSION

We are a regional cooperation alliance that integrates the participation of all parties involved, formed by experts and allies of patient organizations; committed to establish favorable regulatory contexts, develop activities, programs, projects and action plans to improve the quality of life and welfare of people with rare diseases and their families in the Caribbean and Latin America in a joint and articulated method.

VISION

To be the reference alliance in the Caribbean and Latin America that integrates and commits multiple actors such as academia, researchers, doctors, medical societies, governmental or non-governmental organizations, private companies and patient advocacy groups; that develops joint actions to improve the lives of people with rare diseases and their families.

Objectives

To disseminate and raise awareness on rare diseases.

Promote and participate in public policies, regulatory frameworks and codes of ethics favorable to people with rare diseases and their families.

Promote programs that encourage early detection and diagnosis.

Contribute to increase timely and equitable access to treatment. 

Promote the development of clinical studies and research.

To promote the reduction of time in the patient’s pathway; to promote timely care, with quality, multidisciplinary and humanized services.

Gather the perspectives and experiences of patient organizations to enable regional integrative activities and actions that meet their expectations and needs.

Support with training programs and resources, in order to empower and strengthen the capacities of patient representatives and their organizations.

Contribute to reducing the burden and cost of rare diseases.

Cooperate in the development of national and multinational projects according to the specific needs of the countries and the region.

Encourage epidemiological identification, develop patient registries and lists of rare diseases in national and regional environments that promote greater knowledge, exchange of information and data.

Connect expert centers and multidisciplinary teams regionally.

To create strong bridges with all stakeholders in order to reduce gaps and inequalities on behalf of people with rare diseases.

Promote formal multi-stakeholder participation in decision making.

Develop and improve capacities of health personnel and decision-makers on rare diseases.

Promote inter-institutional agreements with internships, among others; to strengthen their decision making capacity. 

Visibilize, promote and support the advocacy of human rights advocates for people with rare diseases; that allows improving their quality of life, their well-being and their families.

To create theme working groups that allow the development of proposals for improvement and actions to solve specific national or regional needs. 

Participate in and develop virtual or in-person conferences of all kinds.

Promote and develop multinational studies of all kinds.

Produce and publish articles and reports that promote sources of information in the region.

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Bandera Urguguay

Task force created to work on rare disease patient and family law – In the first days of September, a working group was officially set up in Parliament with the aim of drafting a bill that takes into account the demands of rare disease patients and their families. This is the second part of the Resolution Rare 4 campaign, led by Eurordis (European Organization for Rare Diseases) and the International Committee for Rare Diseases.

Bandera Perú

Regulation of Law No. 29698, Law that declares of National Interest and Preferential Attention the Treatment of persons suffering from Rare or Orphan Diseases.

Bandera Panamá

Panama currently has Law 28 of October 28, 2014, which guarantees social protection to the population suffering from rare, infrequent and orphan diseases. The national interest in rare diseases is recognized by the State, seeking to guarantee access to health services, treatment and rehabilitation for people diagnosed with these diseases, in order for citizens to benefit from the different plans, programs and public health strategies to improve the quality and life expectancy of patients.

Bandera México

Internal REGULATIONS of the Commission for the Analysis, Evaluation, Registration and Follow-up of Rare Diseases – Aims to regulate the organization and operation of the Commission for the Analysis, Evaluation, Registration and Follow-up of Rare Diseases, as well as to establish the procedure and criteria to be followed for the definition, registration and follow-up of those diseases that should be considered as rare and, if necessary, the exclusion of those already defined as such.

Standing Commission Gazette
General Health Law

Bandera Colombia

Law 1392, 2010: by which it is recognized that orphan diseases represent a problem of special interest in health, given their low prevalence in the population, but their high cost of care, they require within the Social Security Health System an insurance mechanism different from that used for general diseases, including high-cost diseases, and highly specialized care processes with a large administrative follow-up component.

National Decree 1954 de 2012: “Whereby provisions are issued to implement the information system for patients with orphan diseases”. 

Agreement 537, 2013: by which the design and implementation of a strategy on the promotion of early detection, follow-up, rehabilitation and surveillance of people affected by orphan diseases in the Capital District.

bandera de chile

Law N° 20.850, june, 2015: This Law provides financial protection for specific health conditions, such as oncological, immunological and rare or infrequent diseases, which have been determined through a Supreme Decree of the Ministry of Health.

bandera brasil

 

In Brazil, neonatal screening for rare diseases has been implemented since 2001 and, since 2009, a national policy for comprehensive care in clinical genetics has been in place.

Policy for the Integral Attention to Subjects with Rare Diseases: establishing guidelines for offering comprehensive care (diagnosis, treatment and/or long term management) to individuals affected by rare diseases in the public unified health system (the same definition of World Health Organization for rare diseases, as those affecting less than 65 out of 100,000 individuals, was used). This policy defines an annual plan of action and financial and logistical support, and envisages the establishment of a national database (important for facilitating the access to high cost drugs, genetic tests, for instance) and the creation of reference treatment centers. These centers should be able to evaluate patients, perform genetic testing procedures, diagnose, treat and offer genetic counseling. The policy defines the two main axes, genetic and non-genetic rare diseases. In addition, it divides the genetic rare diseases in 3 groups: congenital anomalies & late-onset diseases, intellectual disability and metabolic disorders. In this fashion, genetic services in SUS will be installed and funded not by themselves, but as part of the more general policy of rare diseases.

Bandera Argentina

Law 26689. Comprehensive health care for people with rare diseases.– The purpose of this law is to promote comprehensive health care for people with Rare Diseases (RDD) and to improve the quality of life for them and their families.

Decree 794/2015. Regulation of Law 26689.

Resolution 2329/2014. National Program for Rare Diseases and Congenital Anomalies. The National Program of Rare Diseases and Congenital Anomalies is hereby created under the orbit of the national direction of community medicine, under the subsecretary of community medicine, maternity and children, of the Ministry of Health of the Nation.

Resolution 240/2019. Internal operating regulations of the National Commission for Patients with Spinal Muscular Atrophy. Whereby the internal operating regulations of the NATIONAL COMMISSION FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY were approved.

Resolution 1453/2019. National Commission for Patients with Spinal Muscular Atrophy to operate within the orbit of the Rare Diseases Program. The NATIONAL COMMISSION FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY is hereby created, which shall operate within the Rare Diseases Program of the National Directorate of Maternity, children and adolescents under the Secretariat of Health Promotion and Prevention and Risk Control.

Resolution 1115/2020. Guarantee the continuity of coverage for the treatment of patients with Spinal Muscular Atrophy, in types I, II and IIIA. Health Insurance Agents and Prepaid Medicine Entities must guarantee the continuity of coverage for the treatment of patients with Spinal Muscular Atrophy, types I, II and IIIA.