Brazilian families launch international fundraisers for rare disease treatments

A Brazilian tennis coach, 45, has been hospitalized in France for over 40 days with dermatomyositis affecting his lungs. His family and friends have started a campaign to raise roughly US$265,000 to cover treatment costs and a possible repatriation, noting that insurance will only cover about US$100,000. Brazilian authorities, including the Public Defender’s Office of the Federal District and the Ministry of Foreign Affairs, are coordinating medical assistance and a potential lung transplant.

In a separate case, brothers Pedro and Tiago, aged 13 and younger, from Acre, Brazil, have been accepted into a United‑States gene‑therapy trial for limb‑girdle muscular dystrophy type 2C, compounded by osteopetrosis. The family needs about US$1 million (approximately R$5.2 million) to secure the treatment slot, which is limited in time and could be reassigned if payment is not made promptly. They have launched a nationwide fundraising drive, including a virtual “vakinha” and Pix donations, to meet the target.

Both stories illustrate the challenges Brazilian patients with rare, life‑threatening conditions face abroad and the reliance on public and private fundraising to access specialist care.