Delegate: Brazilian Association of Narcolepsy and Idiopathic Hypersomnia (ABRANHI)
Affiliation: Brazilian Association of Narcolepsy and Idiopathic Hypersomnia
Short Bio: The Brazilian Association of Narcolepsy and Idiopathic Hypersomnia (ABRANHI) is a nonprofit, non-governmental organization dedicated to raising awareness about sleep disorders, particularly those whose main symptom is excessive daytime sleepiness. These disorders include narcolepsy and idiopathic hypersomnia.
Founded in 2019 by patients and their families, ABRANHI promotes educational campaigns in partnership with scientific associations. It organizes symposiums, international conferences, public hearings, and works with experts and legislators to implement public policies that ensure broad access to diagnosis and treatment.
ABRANHI participates in conferences organized by national and international scientific societies and disseminates informational materials. It was the only Latin American association to participate in the Sleep Consortium and the Illuminate Hypersomnia project. Additionally, ABRANHI collaborates with the Hypersomnia Research Center at Pedro Ernesto University Hospital (UERJ) and Laccops at the Universidade Federal Fluminense (UFF).
The organization also provides support and guidance to patients and their families, helping them manage the daily challenges imposed by narcolepsy and idiopathic hypersomnia. ABRANHI works to improve access to more effective treatments in Brazil, such as sodium oxybate (Xyrem), pitolisant (Wakix), and solriamfetol (Sunosi), which were recently made available in Brazil thanks to the efforts of ABRANHI and his members.
Activity: Campaign on ABRANHI’s Social Networks (Facebook and Instagram):
This campaign will share practical tips and stories of ordinary people who, despite their social and economic challenges, have prioritized sleep health to improve their quality of life.
Meeting of Patients with Sleep Disorders: This event, titled “WAKE UP LATIN AMERICA: Sleep Health from the Patients’ Perspective,” will bring together patients with sleep disorders (including narcolepsy and idiopathic hypersomnia) from Brazil, Argentina, Peru, Chile and Ecuador, along with health professionals. The event is organized in partnership with the Asociación de Narcolepsia e Hipersomnias de Argentina and the Clínica Ricardo Palma in Peru.
Public Awareness Campaign: Handout Distribution at the Neurology Department of HUPE-UERJ. This initiative is a partnership between ABRANHI (Brazilian Association of Narcolepsy and Idiopathic Hypersomnia), the Rare Health Platform/Laccops/UFF..
Location: Campaign on ABRANHI’s social networks: @abranhioficial and facebook.com/abranhi Meeting of Patients with Sleep Disorders: the meeting will be held via Zoom to facilitate participation across Latin America. Public Awareness Campaign: HUPE/UERJ. Av. 28 de Setembro, 77 – 2º andar
Date of Activity: Campaign on ABRANHI’s social networks: March 14 to April 3 Public Awareness Campaign: HUPE/UERJ March 17 – April 3 For collaboration or further details, please get in touch.
Submitted by: Ana Cristina de Souza Braga and ABRANHI
