Public Hearing in the Chamber on Friedreich's Ataxia

Amália Maranhão, Diretora da ABAHE

The photo shows Amália Maranhão, Director of Abahe (Brazilian Association of Hereditary and Acquired Ataxias), commenting on the enormous difficulty in accessing treatment for patients with Friedreich's ataxia and other rare diseases.

Powerful speech, in a space provided by Deputy Duarte Júnior @duartejr_ at a Public Hearing yesterday (08/19/2025) in the Chamber of Deputies, to whom we are grateful.

Other patients and caregivers had the opportunity to speak and gave moving testimonies about this rare, serious, degenerative and still incurable disease, which already has a single medication approved by ANVISA, Skyclarys, but which has not yet reached the SUS, and therefore remains inaccessible to the 800 Brazilians (mostly children and adolescents) who suffer from Friedreich's ataxia.

People with ataxia are in a hurry.

If you have ataxia, register with Abahe.

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