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[SITUATION] · [QUIET] · [HEALTH]
11 clusters · 16 sources · 135 days · First seen · Last updated
Brazilian rare disease fundraising drives
Overview
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. 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.
Entities
Tiago Fleming · Pedro Fleming · Fabiula Albuquerque Fleming · Fabiula Fleming · Pedro
Timeline
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[HEALTH] 2 sourcesFleming siblings' fundraising campaign reaches R$ 4 million
A Brazilian fundraising campaign for siblings Pedro and Tiago Fleming has raised R$ 4 million toward a R$ 5.2 million goal to fund a rare disease gene therapy study in the United States.
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[HEALTH] 4 sourcesFundraising campaign targets R$ 5.2 million for Fleming brothers' gene therapy
Brothers Pedro and Tiago Fleming are raising R$ 5.2 million to travel to the US for clinical gene therapy to treat a rare muscular dystrophy.
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[HEALTH] 2 sourcesFundraising for Brazilian brothers reaches R$ 3.2 million for US clinical trial
A fundraising campaign for Brazilian brothers Pedro and Tiago Fleming has raised R$ 3.2 million to fund their participation in a rare gene therapy clinical trial in the United States.
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[HEALTH] 3 sourcesGene therapy study sought for brothers with rare muscular dystrophy
Two brothers from Acre, Brazil, are seeking R$ 5.2 million to participate in a gene therapy clinical study in the US for a rare form of limb-girdle muscular dystrophy.
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[HEALTH] 2 sourcesFundraising for Brazilian brothers reaches R$ 2 million
A Brazilian fundraising campaign for brothers Pedro and Tiago Fleming has raised over R$ 2 million to fund specialized treatment for a rare genetic muscular dystrophy in the United States.
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[HEALTH] 2 sourcesAcre Fundraising Drive Targets Gene Therapy for Brothers Pedro and Tiago
Acre brothers Pedro and Tiago seek R$ 5.2 M for a rare muscular dystrophy gene‑therapy trial, backed by singers Nathanzinho Lima and Leonardo.
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[HEALTH] 2 sourcesBrothers with Rare Muscular Dystrophy Seek $1 Million for US Clinical Trial
Rio Branco auction house Galileu Leilões launches a fundraiser to collect R$ 5.2 million for brothers Pedro and Thiago, who need US clinical‑trial treatment for a rare muscular dystrophy before age 13.
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[HEALTH] 2 sourcesBrazilian charitable health fundraisers support children and siblings
In Brazil, Richarlison’s R$ 60k gift aids a baby’s treatment, while a nationwide drive tries to raise R$ 5 million for Acre brothers needing gene therapy abroad.
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[HEALTH] 3 sourcesBrazilian families launch international fundraisers for rare disease treatments
Brazilian families are fundraising internationally for a tennis coach with dermatomyositis in France and two brothers from Acre needing costly US gene‑therapy for rare muscular dystrophy.
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[HEALTH] 2 sourcesBrazilian school raises funds for student with rare disease
Colégio Unibave students raised R$ 754 and spurred an online campaign that has collected over R$ 190 k to aid a classmate battling acute intermittent porphyria.
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[HEALTH] 2 sourcesBrazilian teens with rare diseases launch fundraising drives
Two Brazilian 15‑year‑olds with rare diseases—retinopathy from thalassemia and acute intermittent porphyria—are facing costly treatments, prompting community fundraising campaigns.
Sources
93noticias.com.br · ac24horas.com · brasilemfolhas.com · contilnetnoticias.com.br · disneyplusbrasil.com.br · folhadoacre.com.br · imprensanewssul.com.br · juruaemtempo.com.br · leiagora.com.br · litoralmania.com.br · mehlmeisel.de · momentomt.com.br · nahoradanoticia.com.br · oaltoacre.com · portalacre.com.br · radiocruzdemalta.com.br
This summary has been updated 6 times: see revision history