Success in Chile: Social Media Campaign Compels Government to Support Rare Diseases

Cara Hesse | April 06, 2012

For the first time in Chile’s history, an online citizen referendum succeeded in changing government policy in support of rare diseases. The referendum was initiated when, in July 2011, the Chilean Minister of Health broke a long-standing promise to provide funding for rare genetic diseases. Determined not to give up, rare disease patient organizations joined together to develop a multi-media campaign using Twitter, Facebook, and video as well as more traditional media outlets to bring public pressure to bear on the Chilean legislature.

Well-known Chilean figures—actors, sports stars, and TV personalities—participated in the campaign by serving as the public face to the online campaign. More than 200,000 Chilean citizens signed the petition, supporting the rights of all Chileans born with rare diseases the opportunity to live healthier lives. The Rare Disease Law has passed the Chilean legislature and provides funding in 2012 so that individuals can access treatment.

Myriam Estivill Flores, President of FELCH (Fundación de Enfermos Lisosomales de Chile/Chilean Foundation for Lysosomal Storage Disorders), played a key role in the campaign and was delighted with the results of the petition. As Myriam said, "It gave me great happiness that this gained such widespread public attention, so that people can better understand rare genetic diseases and have them in their mind. It was very satisfactory to know that the public supported this campaign." For more information on FELCH and their role in the campaign, visit http://www.felch.cl/.

This video details the campaign as well as demonstrates the building blocks needed in any movement that seeks to create change. Key factors such as individual patient stories, media outreach, and policy advocacy are just some of the necessary elements. We encourage you to take a few minutes to watch this great video!

Final Plebiscito Ciudadano from Plebiscito Ciudadano on Vimeo.

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