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6 clusters · 11 sources · 61 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 after an appendectomy and needed roughly R$ 250 000 for medication and intensive care. A school‑yard cake‑sale in São Paulo raised R$ 754 and helped the online drive exceed R$ 190 000.

In early 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 and received coordination from the Public Defender’s Office and the Ministry of Foreign Affairs for possible lung‑transplant assistance. The same month, brothers Pedro and Tiago Fleming, 13 and younger from Acre, were accepted into a U.S. gene‑therapy trial for limb‑girdle muscular dystrophy type 2C with osteopetrosis. Their “Vida para Pedro e Tiago” campaign targeted about R$ 5.2 million, drawing support from local officials, bar associations, and social‑media appeals that had already raised over R$ 132 000.

High‑profile backing arrived on 11 July when footballer Richarlison donated R$ 60 000 to a separate infant’s treatment drive, raising public awareness. On 29 July, auction house Galileu Leilões organized a live event with national partners, raising roughly R$ 5.2 million for the Fleming brothers to cover travel, medical and trial costs before the U.S. trial’s age limit of 13 closes.

By early August, Brazilian singers Nathanzinho Lima and Leonardo publicly endorsed the Fleming campaign, with Leonardo’s autographed guitar slated for auction, underscoring continued celebrity involvement in the nationwide effort to bridge Brazil’s health‑care gaps for rare‑disease patients.

Entities

Pedro · Nathanzinho Lima · Marcelo Lemos · Governor Mailza · Leonardo

Timeline

  1. 15 days ago

    [HEALTH] 2 sources
    Acre 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.

  2. 19 days ago

    [HEALTH] 2 sources
    Brothers 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.

  3. about 1 month ago

    [HEALTH] 2 sources
    Brazilian 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.

  4. about 1 month ago

    [HEALTH] 3 sources
    Brazilian 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.

  5. 2 months ago

    [HEALTH] 2 sources
    Brazilian 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.

  6. 2 months ago

    [HEALTH] 2 sources
    Brazilian 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 · litoralmania.com.br · nahoradanoticia.com.br · oaltoacre.com · radiocruzdemalta.com.br

This summary has been updated 1 time: see revision history