At the second Ibero-American Rare Diseases Meeting, ALIBER reviews progress and develops strategy for region

Image of ALIBER members and royalty

In early November 2014, the second Ibero-American Rare Diseases Meeting took place in Moita, Portugal, in the presence of Her Majesty the Queen Letizia of Spain and First Lady of Portugal, Maria Cavaco Silva, bringing together stakeholders to examine the situation for people with rare diseases in the region, review progress made in participating countries, and share best practices. It was also the occasion for members of the Ibero-American Rare Diseases Alliance (ALIBER) to gather and develop their strategy for the coming year, moving forward initiatives that will improve conditions for people living with a rare disease in Ibero-American countries.

The Ibero-American Rare Diseases Alliance (ALIBER) was created in 2013, in partnership with the Portuguese National Alliance for Rare Disease (FEDRA) and the Spanish National Alliance for Rare Diseases (FEDER). The charter of the Ibero-American Rare Diseases Alliance (ALIBER) was signed in October 2013 when representatives of patient associations and other stakeholders from 11 Latin American and four European countries gathered in Murcia, Spain.

ALIBER coordinates efforts to establish common goals in Spanish- and Portuguese-speaking regions in order to improve the situation for the millions of families affected by rare diseases by exchanging experiences, sharing good practices, and coordinating activities. Throughout Latin America, awareness for rare diseases is growing and patient organisations have capitalised on Rare Disease Day to bring attention to the cause. In 2014 alone, there were over 50 different Rare Disease Day activities and events held throughout the region. Several of the ALIBER members are also members of EURORDIS.

ALIBER patient organisation members work together in conjunction with government officials, researchers, and other stakeholders in order to advance the rights and improve the quality of life for patients and families. Currently, over 380 patient organisations from participating countries are part of ALIBER, including organisations in Argentina, Brazil, Colombia, Ecuador, Guatemala, Mexico, Portugal, Spain, Uruguay and Venezuela.

The second Ibero-American Rare Diseases Meeting provided the occasion to take stock of progress made in Latin America. For example, in Argentina, three years of ongoing dialogue with the Health Ministry is expected to culminate in a national law recognising rare diseases. In Brazil, specific rare disease legislation was adopted in February 2014 based on policies that include resources for diagnostics and care. In Mexico, legislation recognising rare diseases has been introduced in several states over the past two years, building toward a national legislation. In Uruguay, a national rare disease reference centre has been established. The meeting provided the forum to define specific actions: ALIBER will create rare disease state-of-the-art reports for each member country; undertake specific activities to increase membership across the region; seek funding for common projects; and develop their website.

ALIBER is working with EURORDIS and other key actors towards the creation of Rare Diseases International, a global alliance of rare disease patient that will be the voice of people living with rare diseases throughout the world.

The next meeting for Ibero-American rare disease stakeholders will take place in Guadalajara, Mexico, in 2015.

 

Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 10/11/2014
Page last updated: 11/11/2014
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases