About ABAHE
ABAHE is a non-profit association that brings together people with hereditary and acquired ataxias from all regions of Brazil.
ABAHE is a Brazilian non-profit organization which maintains a database of ataxia patients in Brazil (hereditary and acquired). We work for the best interest of all people who suffer from these devastating conditions, and we look forward to helping bring more research and clinical trials to Brazilian patients, as well as providing guidance and guidance to this community. Our database has more than 4.000 diagnosed ataxians, mostly SCA3 and FA (Friedreich Ataxia). We also work to promote and support the realization of meetings, webinars, workshops, and other events related to all types of ataxias, and watch over the development of public health policies from the Brazilian public sector.
Amalia Maranhao
Director of ABAHE
ABAHE was born from the need for an institution to represent Brazilian ataxia sufferers. It began with a partnership with a discussion group known as Ataxianet. This was the initial spark that led to the creation of ABAHE. With the popularization of the internet, discussions have increased on social media platforms such as Facebook, Instagram, YouTube, and WhatsApp, with general and specific groups where people can exchange information on topics related to ataxia.
Objectives
ABAHE focuses on:
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Register and represent carriers of hereditary and acquired ataxias in Brazil
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Promote and encourage the study of hereditary and acquired ataxias in the search for new forms of treatment;
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Offer information on guidance and treatments through interaction between members from different states;
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Make treatments and diagnoses more accessible to sufferers;
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Promote and support meetings, symposia, lectures, seminars and other events that address ataxias;
Ataxia Awareness
One of ABAHE's main priorities is to raise awareness about ataxias. Ataxias are rare and little-known diseases, and it is important to spread information about this serious condition. Raising awareness about ataxias and registering patients in Brazil in the NATIONAL REGISTRY is important to facilitate the creation of better public health policies, and it also facilitates the participation of Brazilian patients in natural history studies and clinical trials of drugs and therapies under development. If you are interested in promoting ABAHE's work, please share ABAHE posts wherever you can: on social media, at your workplace, school, or at home, if you have permission to do so.
FOLLOW ABAHE ON INSTAGRAM
ataxias_in_brazil
https://www.instagram.com/ataxias_no_brasil/
Profile maintained by volunteers from the Brazilian Association of Hereditary and Acquired Ataxias
Community looking for research on medications for Ataxias in general.
Coordinator: journalist and mother of rare Amalia Maranhão
ataxiadefriedreichbrasil2023 (Friedreich's Ataxia)
https://www.instagram.com/ataxiadefriedreichbrasil2023/
Profile maintained by volunteers from the Brazilian Association of Hereditary and Acquired Ataxias
Community seeking drug research for Friedreich's Ataxia.
Coordinator: patient's mother and journalist Amália Maranhão, since 2014.
FOLLOW ABAHE ON YOUTUBE
Ataxias in Brazil - Abahe
https://www.youtube.com/@abahe-ataxiashereditarias
The official channel of Abahe - Brazilian Association of Hereditary and Acquired Ataxias. Our mission is to help people with ataxias learn about their health and rights, access early diagnosis and treatment options, and contribute to improving their quality of life.