The Collaborative for Rare and Low-Prevalence Diseases in Latin America and the Caribbean (CEPCAL) is a regional initiative launched in 2020. Our vision is to bring together, synergize, and consolidate the efforts of patients, organizations, researchers, physicians, regulators, industry, and all stakeholders involved in the diagnosis, treatment, care, and research of rare and low-prevalence diseases in the region.

It's a census-like tool that seeks to understand the number of people living with a rare or low-prevalence disease in Latin America and the Caribbean, their reality, and their challenges in access to diagnosis and treatment. It is voluntary and brief: it consists of 18 questions about the diagnosis and care of rare and low-prevalnce diseases. Your participation will provide reliable and important data to raise awareness about these conditions, and contribute to a better understanding of their challenges.

Your participation in this registry is important to better understand how many people are living with rare and low-prevalence diseases in Latin America and the Caribbean , what diseases they are living with, and what diagnostic and treatment needs they have. This will help better inform public health decisions and policies in Latin American countries.

Yes. Since CEPCAL's Registry does not focus on a single disease or specific group of diseases, it seeks to gather information from as many people as possible living with various rare and low-prevalence conditions in Latin America and the Caribbean.

Your data will be protected and analyzed anonymously and confidentially. It will not be shared with third parties and will be stored in a secure database. The information obtained will be used exclusively for academic and research purposes by CEPCAL, always respecting privacy and data protection regulations.

You can register if you are:

• An adult person living with a rare or low-prevalence disease who reside or were born in a Latin American or Caribbean country.

• A caregiver, legal representative, or guardian representing a minor or an adult person who, due to a disability, is unable to complete the registration themselves.

No. There are more than 7,000 recognized rare diseases, and in many cases, a diagnosis can take years to confirm. If you don't have one yet, you can select the "No, no diagnosis" option. Your information is valuable, and we're interested in hearing about your experience.

If you have any questions or would like more information about CEPCAL's Rare and Low-Prevalence Diseases Registry, please contact us at: registro@cepcal.org