[REVISION HISTORY]

Brazilian rare disease fundraising drives

Updated 6 times since CLSTR started tracking revisions of this situation.

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2026-09-23 21:16 UTC → 2026-10-17 16:14 UTC · added ~~removed~~

In early June 2026, Brazilian teenagers with life‑threatening rare diseases began launching online campaigns to pay for treatments not covered by the public health system. A 15‑year‑old from Capão da Canoa with thalassemia‑related bilateral retinopathy sought funds for intra‑ocular injections, while another 15‑year‑old, Mateus Carrer Dela Justina, was diagnosed with acute intermittent porphyria and needed roughly R$ 250,000 for medication and intensive care. A school‑yard cake‑sale in São Paulo helped the online drive exceed R$ 190,000. In July, the focus widened to a 45‑year‑old Brazilian tennis coach hospitalized in France with dermatomyositis, whose family launched a US$ 265,000 campaign. Simultaneously, brothers Pedro and Tiago Fleming, aged 12 and 7, were accepted into a U.S. gene‑therapy trial for limb‑girdle muscular dystrophy type 2C. Their “Vida para Pedro e Tiago” campaign targeted approximately R$ 5.2 million to cover travel and medical costs before the trial’s age limit of 13 closes. High‑profile backing arrived on 11 July from footballer Richarlison, and on 29 July, auction house Galileu Leilões organized a live event to support the brothers. By early August, singers Nathanzinho Lima and Leonardo publicly endorsed the Fleming campaign. By late August, the fundraising drive for the brothers surpassed R$ 2.06 million toward their final goal of R$ 5.22 million. Neuromuscular specialist André Macedo has since detailed the mechanics of the proposed gene therapy, explaining that the procedure aims to use a viral vector to deliver DNA that enables the body to produce the sarcoglycan protein, which is absent in the brothers due to their condition. ~~The family continues to race against time to secure the experimental protocol in the United States.~~ By mid-September, the Fleming campaign reached R$ 3.2 million, bolstered by a R$ 188,000 contribution from the Brazilian Bar Association in Acre (OAB/AC). Local support in Rio Branco included a media partnership with Portal Acre and a charity bazaar hosted by Ministério Internacional Vida Plena.

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